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 Help with LBD 
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Joined: Sun Jun 06, 2010 9:32 am
Posts: 3
Post Help with LBD
I am reaching out to LBDA because of my 90-year-old father. He has been treated with carbidopa-levodopa for 5 years because of a Parkinson’s diagnosis. His physical symptoms have not worsened during that time, but several months ago he began getting paranoid and anxious. We began weaning him off the med against the advice of his neurologist who wanted to increase it and add an antipsychotic.

On May 9th my Dad was unconscious and unresponsive for several hours, taken to emergency and hospitalized for 4 days. It was determined he was having seizures and he was place on Keppra. All this time he was becoming increasingly agitated, delusional and manic. He went back to another hospital, which has a better neurology department, on May 23 and again had a “seizure.” He was there 4 days, had many tests including a 48 hour eeg. At one point he became hostile and combative and was then shipped to a geriatric/psychiatric hospital. The neurologist seeing him in the hospital said he and his partner felt Dad does not have Parkinson’s, but Lewy Body Dementia. They gave us no information or course of action and released him to the psychiatrist’s authority. He did not feel it is a psych problem, though he does have Dad on seroquel.

I have contacted the neuros that saw him in the hospital and have been told to consult his original neuro who misdiagnosed him originally. In doing so, I was told that if my dad has that much dementia there is really nothing that can be done. I have asked about aricept, exelon, etc, but am still waiting for a return phone call.

Dad is now in a rehab facility because he is so weak from being hospitalized so long, but physical rehab is iffy from day to day depending upon his confusion, delusions, and mania. He has much difficulty sleeping and I believe sleep deprivation and exhaustion is also an issue. (Not only for Dad, but for our family as well.) I have tried to get help in our region and have done exhaustive research on the internet and am grasping for straws for some kind of help.

I am Dad’s DPOW and have been taking him to doctor’s appointments for the last 20 years. I very much appreciate being allowed to join the LBDA forum. I really don’t know where else to turn, at this point.

I desperately need to believe in your motto: Lewy Body Dementia Association: Increasing Knowledge, Sharing Experience, Building Hope


Sun Jun 06, 2010 4:10 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Hi Laura,

Sorry to hear about the rollercoaster ride for your dad.

Please go to and do a search on "Boeve Continuum 2004." This paper, by Dr. Brad Boeve, is key to knowing how best to treat LBD. You will find that Dr. Boeve absolutely would support your thinking that an AChEI (Aricept, Exelon, Razadyne) is needed.

I wouldn't really say that the PD diagnosis was a misdiagnosis. PD and LBD are both Lewy body disorders. At the time your dad was given the PD diagnosis, he only had PD. Now he has dementia and psychosis, which would naturally lead one to a Parkinson's Disease Dementia (or LBD) diagnosis. I don't really understand why the first neurologist wanted to increase the Sinemet (carbidopa/levodopa) but I do understand why he wanted to add an antipsychotic (such as Seroquel).

Are your dad's wishes with regard to feeding tube and tracheotomy clear? Has anyone discussed brain donation with your father? I encourage you to consider this as part of your planning. It's the only one to confirm the diagnosis.


Sun Jun 06, 2010 5:48 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Hi Laura - in some ways your story is similar to mine. Last year when my 87 year old dad, who supposedly had Parkinson's, was hospitalized and became almost 100% incapacitated overnight, was hallucinating and delusional, with no obvious reason, I asked about dementia drugs. I was told "he's too far gone for those and he'll probably only live another month or two."
Well, 8 months later his neuro put him on Aricept and Namenda, plus he was put on Seroquel, Sertraline and various other things in the fall. He has more lucid moments than he was having around Dec - Jan. Sometimes his thoughts and his speech are VERY clear. Other times his speech and thought are both garbled.
The symptoms and the meds can be so different for so many people with dementia. One of the best bits of advice I've seen on this forum, is to make sure your LOs drs. only start one new med at a time, and start with a small dose at first.
If you have the ability to shop around for a neuro, you may want to get recommendations for a good neuro in your area. It sounds like you may not feel good about going back to the original neuro?
This is a wonderful place for support and info. so I hope you visit often. Take care, Lynn

Sun Jun 06, 2010 7:58 pm
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