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 New in PA 
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Joined: Wed Jul 28, 2010 10:58 am
Posts: 2
Post New in PA
My husband was diagnosed with LBD in March of this year at age 63. Looking back, we've been aware of his symptoms for a few years (inability to focus, perception problems, difficulty doing finances, fatigue). At first we thought his cognitive symptoms might be caused by some prostate meds he was taking, but following a successful prostate procedure, we got him off the drugs. The symptoms, of course, didn't go away. His urologist recommended a neurologist who did some tests and sent us to another neurologist at the U. of Penna. When I hear some of the stories of what other people have been through in finally getting a diagnosis I believe we were lucky that it happened so directly.

Right now he's highly functional. The only drug he's on is Aricept, and he has responded well to it. He has recently developed some minor hand tremors that are more of a nuisance than anything. Although he prefers not being alone, I'm still able to work (part time), exercise, shop, and do other things on my own.

We've joined a support group that is relatively new in our area. Although it's discouraging to see where he's headed, it's uplifting for him to communicate with other people who experience similar symptoms.

My husband will be eligible for Medicare next year. Currently we pay for our own high-deductible policy. I'm hoping a generic for Aricept becomes available when the patent ends this November. I'm also hoping he doesn't require many new drugs in the near future. I've seen how complicated the drug mix can get.

I feel as though we are in a different situation than a lot of the people who participate in these forums. But at the same time, I see what's coming, and I'm sure that the experiences of others will be of great benefit.


Wed Jul 28, 2010 12:26 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New in PA
Joyce,
Glad to hear such a positive story! Who is your husband's neurologist at UPenn, and do you still see him/her? Amazing that in all of PA the only support group is in Bucks County, and that's where you are!
Robin


Wed Jul 28, 2010 12:47 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New in PA
Welcome to the forum, Joyce! Glad you got an early dx and also found this forum early on. Wish I had found it sooner as it would have prevented some disastrous medication problems. It's very difficult to get physicians to minimize the medications. I think they honestly try to help with physical and behavioral problems and believe that trying a new medication might be the solution. The only medications my husband is taking that I know have been effective are Stalevo [for his PD symptoms] and Exelon patch for his cognitive deficit, which also helped with some anger issues, at least initially. We really have no way of knowing if it's still effective so I just keep applying it daily.

Looking back, I can see that my husband probably had early LBD from 2002-2005, while I was still working as an RN. His moods were so volatile and unpredictable and his anger so difficult to manage that I worked mostly to get away from him. By mid-2005 he was diagnosed [initially with PDD] and I quit work to take care of him. I felt really awful when I realized he had been sick all along but I thought he was just being difficult. He was dx with a passive-aggressive personality disorder many years ago.

Glad you are here. We're all in this nightmare together and hold each other up. When one is feeling weak, another might be strong. And there is a lot of good information here, as well. There is a LBD Caring Spouse forum on Yahoo which is restricted to spouses that I also find supportive.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Jul 28, 2010 1:14 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3394
Location: Vermont
Post Re: New in PA
Hi Joyce - I'm glad you've found this forum and that things aren't too bad with your husband yet. Hopefully he won't experience drastic declines mentally and physically like some of our LOs have, and you can have years of mobility and decent cognitive functioning.
There are great people here and a lot of info. so I hope you'll stop by often. The chat is a good place to meet others too to vent, make friends, get info., whatever. Welcome, 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.


Wed Jul 28, 2010 3:38 pm
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Joined: Wed Jul 28, 2010 10:58 am
Posts: 2
Post Re: New in PA
Robin, my husband's neurologist at U of Penn is H. Branch Coslett. We've only seen him once (at diagnosis) but I've spoken to him on the phone several times. We'll be seeing him again in September.


Wed Jul 28, 2010 3:47 pm
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Joined: Fri Jul 30, 2010 11:54 pm
Posts: 1
Post Re: New in PA
Joyce,

I am in Harrisburg. My father, 73 years old, was just diagnosed with LBD. He has only had the hand tremor for the last year and was diagnosed first with Parkinsons, then with acute stress disorder. He has not had any cognitive issues really and my mom and I feel that he has been misdiagnosed....AGAIN. Does your husband show any hand tremors? My dad only has it in his hand. He was seen by a neurologist in the area, then was sent to Hershey Med which is where he received the LBD diagnosis. I am still scared that it may not be correct. We have gotten advice to get him in at John Hopkins which we are waiting to hear back from them once they receive his medical records. I am afraid they will be biased in their diagnosis having seen the records and this being a 3rd opinion. I too feel I am in your position because my dad is pretty high functioning. He has never ever had a hallucination, no trouble sleeping, nothing but the hand tremor. I am sure you have been doing a lot of research on your own on the internet. Me and my family made the mistake of doing this as well...reading the horror stories. I finally have just kept it to this site. I will pray for your husband and look forward to hearing back from you.

Anitra


Sat Jul 31, 2010 12:01 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New in PA
Anitra,
Without any cognitive issues, your father couldn't have LBD. Could just be PD.
Robin


Sat Jul 31, 2010 11:40 am
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Joined: Sun Apr 19, 2009 12:30 am
Posts: 6
Location: San Francisco
Post Re: New in PA
Hi Joyce. My husband is 68 and was diagnosed with LB two years ago. He is functioning ok on his own and I am working full time. I need to continue to work as I am 11 years younger and we have a 14 year old son. His symptoms are mostly cognitive (confusion) and hallucinations. He has a little bit of hand tremor. The Aricept has done wonders - mostly with the hallucinations. However is is now on 15 mg and the insurance will only pay for 10 mg. According to his doctor, the FDA has only approved 10 mg, but he often prescribes higher doses. Not sure what comes next for us, but we seem to be in similar situations. I am originally from PA, but currently live in San Francisco.
Wish you all the best,
Barbara


Sat Sep 25, 2010 1:47 am
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Joined: Sat Sep 11, 2010 6:25 am
Posts: 9
Post Re: New in PA
Joyce - I fully understand how difficult it is to get doctors to minimize medications. My mother was very sensitive to all medication. If one pill was called for we always started with a quarter of a pill. Looking back, my mother had symptoms of this disease long before she was diagnosed. She was able to function in the early years on her own. She began to decline with her motor skills and began hallucinating which resulted in having someone with her from when she got up in the morning until bedtime. This lasted for quite some time as well. Mom had two years of 24 hour care at home (I am blessed to have four sisters who did this with me) but then suffered a stroke. At that time she went to a skilled nursing facility for a month. We realized we couldn't do it alone any longer and hired 24 hour nursing care for her in her home, which Mom had for the next two years, until she passed. What I want you to know is this - for us, Mom always stayed pleasant. She had quality of life up until a few months before she passed. We were blessed that she always knew her kids throughout this ordeal. She definately suffered with dementia (thinking she had visited the moon with my deceased father, thinking there was a drug and prostitution ring at the local hospital, capgras syndrome for a short time, etc.) but my mother did not suffer some of the more difficult aspects of the disease in terms of personality which made it easier for all of us. The road for this disease is a difficult one, there is no doubt. If you remain adaptable (things can change daily) you will do fine. Mom knew how much she was loved and that brought us all great comfort and I'm sure the same will be true for you.


Mon Sep 27, 2010 5:45 am
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