Parkinson's Disease Tulip


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Old 02-12-2013, 12:46 AM #1
anninva anninva is offline
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Confused New here --FIL w/PD and dementia?

Hi, hope it's okay to be here even though I'm not a person with PD. I'm not exactly a caregiver either, so not sure where I belong but I need help!

My FIL is 87, dx 10+ yrs ago. He's been home all this time with my MIL with no home help except two days of day program - thank goodness for both of them. He has been struggling with communication for a long time now, but has always been "in there", eats like a horse, relatively slow progression all things considered. Two weeks ago my partner and her sibs (they live west coast, we live 3hrs away mid-Atlantic) were home for his bday. He talked about being worn out, discouraged, depressed, and suicidal. Totally understandable to me! The he started paranoid delisional statements. By last Sunday my MIL called and told my partner: come now. She never asks for help. Long story long (sorry) he has been in hosp since last Mon, more delusions, paranoia, personality changes, etc. I need help understanding what is going in and if it means that he is going to die soon. Sorry. It's just my biggest fear. Very sad and scary. Why would it just start?

Thank you for your patience in reading this far and any help! This seems like a very loving place. Thanks! Ann
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Old 02-12-2013, 01:49 AM #2
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I suppose they are checking all his medications while he is in the hospital, maybe something needs to be changed or dropped or possibly added...

His quick change in attitude/emotions would be very worrisome I'm sure.
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Old 02-12-2013, 07:57 AM #3
Bob Dawson Bob Dawson is offline
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Anninva,

I cannot answer your questions because I do not know the answers. I am taking 4 drugs and every one of them warns of hallucinations as a side effect, in addition to the disease itself. It is such a chemical soup I don't know what causes what. I know that the elderly with dementia can slip deeply into an unreal world.

It is a frightening thing to face. One way to make it less frightening is to see it. Dr. Sacks is not talking about near-death hallucinations; he is talking about people who live with hallucinations in their every day life. This does not help in dealing with the disease, but I find it helps in humanizing it, to reduce the fear of it.
Dr. Sacks latest:
http://www.oliversacks.com/books/hallucinations/
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Old 02-12-2013, 10:00 AM #4
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Default Dr Sacks on YouTube, re: hallucinations

Again, this is not an answer, but it is a humanization that allows us to see what is being said these days about hallucinations:

http://youtu.be/SgOTaXhbqPQ
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Old 02-12-2013, 10:42 AM #5
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Default Insist on seeing a movement disorders specialist

I'm not sure where your FIL is being treated but there are many hospital settings where a patient would be treated by a general neurologist. In some cases, especially when complications from disease or medications arise, the neurologists are not as familiar with the nuances. Please ask the doctors if there are "movement disorder specialists" ... if not, ask them to please reach out to a specialist for consultation in his treatment.

These situations are tricky but it is critical to be proactive.

Best, Debi
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Old 02-15-2013, 04:30 PM #6
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Quote:
Originally Posted by anninva View Post
Why would it just start?

This is the million dollar question. Unfortunately, there is no million dollar answer. Everyone's PD manifests itself differently and the drugs that we take affect each one differently. And it all can change seemingly for no reason at all. But, advanced age plus length of disease may increase the risk for dementia.

I hear the frustration of your simple question. Believe me, after 18 years of this disease, I ask it myself along with its corollary: Why would "it" just stop?. But, my better angel reminds me that we have come as far as we have in our understanding and knowledge of PD because we continue to ask these seemingly simple questions in the face of our personal struggles. Thank you and I wish the best for your family.

(And my better editorial angel makes me realize that I turned this answer to your post into my own soliloquy on my own simple questions. I am sorry. This is not a simple thing that you are dealing with, not at all. I do not have an answer for you except to say that it sounds like your FIL is a fortunate man to have such a caring family.)

Last edited by aj04; 02-15-2013 at 04:57 PM.
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Old 02-15-2013, 07:57 PM #7
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Default Love and prayers are with you

My father has Parkinson's with dementia. He has had some days where he had total delusions and then the next day he was ok again. This disease has a lot of good and bad days. I don't have the answer to your question either but just wanted to tell you I will pray for your family. Make sure you call the neurologist/movement disorder specialist That has been treating him to come to the hospital. We just got a bunch of literature from the parkinsons foundation and they say this is crucial as the hospital doctors are not specialized in this area and could make things worse or ruin progress with medication that took months/years to achieve. God bless. Love to you.
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