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 New and overwhelmed 
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
Post New and overwhelmed
Hi everyone!
I am grateful I have found this forum. I am new to the forum but have been struggling with an unknown for years.
I noticed changes in my husband's behavior around 2002-2003. Just not quite right, confused not quick to understand. He was a very intelligent,well read upper level teacher, I am an RN. I knew things were not right. Drs kept telling me since he was newly retired he was depressed- I kept seeing confusion. He is considerably older than I (he is 69), but I knew something was not right.
In 2005, after a shoulder surgery, he hallucinated. This was linked to pain meds. However, I felt they lasted to long.
In 2007 we went to an ENT specialist because my husband complained of drooling. At this time he was diagnosed with early stage Parkinson's. Again, I was not convinced because I thought confusion usually comes later in PD.
In 2008, after Spine surgery, he went into a total dementia two days post op. Again this was blamed on pain meds. However, I brought him home instead of the recommended rehab facility. I felt I could provide PT may main goal was to get him into familiar surroundings. With the help of our 14 year old daughter(she is now 16), he came out of it to pretty normal in about 6 weeks.
In 2009, I took him to a gerontologist ( I was seeing more deterioration) and they diagnosed with Parkinson's. The L-Dopa caused more confusion. I decreased the dosage until it was helping physically but not hurting mentally.
Finally in Fall 2009, I took him to a neuro specialist @ Duke who diagnosed him with an atypical parkinson's and recommending a neuro/psych assessment. The assessment indicated LBD. This is what I had suspected and feared for about 2-3 years. He is considered moderate - advanced dementia.
I can best describe some of his interactions as "being in the correct book but the wrong chapter" His contributions to a conversation make sense but are often totally irrelavent to the current situation. Then at other times he seems near normal.
This is very frustrating for both me and our 16 year old daughter. She is a great support but I hate at this age she needs to go through this. I still work as an rn in an OR. Luckily, my husband is able to stay home during the day without a problem. He does have a companion come once a week, and a speech therapist comes twice a week.
It is just so hard to not have my best friend to talk to, or I start to tell him about my day and think it's a normal conversation only to find, it's not quite. We have been married for 20 years, and I already miss him and know it will only get worse. He and I just wish we knew what to expect. Having been a college level psych teacher, and his memory has only minimally been affected, he understands what's happening. He is so stoic and brave and worries about me and our daughter more than himself. Which makes me feel guilty when I become irritated!
Any insight will be greatly appreciated! I apologize for the length of my story.
I'm glad I found you!
Sandilee

I


Wed Feb 10, 2010 11:10 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Sandilee,

Sorry you've had to join us here, but welcome. There are quite a few RNs roaming around here.

Who is the neurologist at Duke who diagnosed your husband? And who is the neuropsychologist who did that testing? That info might be useful to others here.

Robin


Wed Feb 10, 2010 11:14 pm
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
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Robin,
thanks for the speedy welcome.
The Neurologist at Duke is Dr. Burton Scott
The testing Neuro/psych is Dr. Tyler Story

Both have been very knowledgeable and helpful.
Sandy


Wed Feb 10, 2010 11:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
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Hi Sandi - welcome to the forum. You'll find lots of supportive people and lots of info. here. I'd encourage you to read the Introductions topic and there you will see other people's stories. Then go on to the other topics. People on the forum are in all stages of dealing with dementia. Some people's loved ones have died, some have just been diagnosed, some people on here have LBD themselves. It is a wonderful community of people who can help you in many, many ways. Same with the chat, which is a separate thing but a really great place to make friends and share info. Sorry you've had to join us, but it is a soft place to land! Lynn


Thu Feb 11, 2010 12:09 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
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Welcome! We have a lot in common. I am also an RN and my husband began having symptoms around the same time as yours did. He is a PhD research scientist, 16 years my senior, and highly intelligent, yet he began having difficulty with executive function and line orientation, as well as becoming increasingly disagreeable. We have been married 34 years, mostly happy, but the past eight years have been hell. He began having delusions and hallucinations about three years ago.

About the same time his cognitive problems began, he exhibited Parkinsonian symptoms such as drooling, muscle stiffness and an increasingly mask-like expression. He was diagnosed with PD and early dementia in 2005. He was recently diagnosed with LBD. He is on Stalevo and Exelon patch. I am taking care of him at home and it's a challenge, to put it mildly. I rely very heavily on the support I get here on this forum.

I am so sorry for what you are going through. You will find much help and comfort here. --Pat


Thu Feb 11, 2010 12:42 am
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
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Thank you Pat-
It is very good to hear from people who have survived what I am living. I have felt very alone for a long time.
My husband started using the Exelon patch about two weeks ago. I've seen some improvement. Less obsessive thoughts, more alert, and less confusion. I am not familiar with the other drug you mentioned I will have to look it up.
:-) Sandilee


Thu Feb 11, 2010 12:50 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
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Stalevo is a three-component Parkinson's drug which he started when diagnosed with PD in 2005. His mobility was improved at that time and I'm assuming is still has some use but there's no way of knowing unless we stop it, and I don't want to do that. I have tried cutting it back to possibly decrease the hallucinations which are sometimes exacerbated by Parkinson's drugs but there was no improvement so I went back to the usual dose. He is ambulatory but unable to position himself in bed or get up out of a chair. He uses a walker outdoors and a cane indoors. He also has had an indwelling urinary catheter for the past year for retention problems. Capgras Syndrome [you may have to look it up---I know I did] is a BIG feature of our everyday life. :( --Pat


Thu Feb 11, 2010 1:04 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Sandy,
Welcome to the LBDA forums, glad you found us but sad for your need, I have heard of these 2 doctors before, there is another good one in the UNC that I had the pleasure of meeting with another family member. I have survived the caregiving but often I think just barely, its a rough road and we need all the support and information we can get. I know you will find much of that here and there is also a caring spouse support group online that is wonderful !

_________________
Irene Selak


Thu Feb 11, 2010 10:27 am
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Joined: Wed Feb 10, 2010 1:26 pm
Posts: 56
Location: NC
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Thanks everyone for such a warm welcome!!
I am already very thankful I have found you.
Pat- Tom is currently taking sinemet for the Parkinson's symptoms. After tweeking the dosage he is doing well - so far... I will have to look into the syndrome you spoke of. Sounds like a terible thing to deal with for everyone involved. You seem like a very strong lady and I am very grateful to have made contact with you. You have already been a comfort!

Thank you
Sandilee


Thu Feb 11, 2010 1:27 pm
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