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 New to LBDA 
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post New to LBDA
Greetings to all... I did not come to this board willingly but out of desperation. My husband was diagnosed with Lewy Body Disease in Aug. 2006, and as you all know, the disease has progressively gotten worse. I have found it to be frustrating, frightening and heart breaking. Communication is becoming more and more difficult and I blame it for many of our marital issues over the past several years. He is now only 67 years old. For many years starting about 1994, things didn't seem right, but I didn't trust my intuition and actually thought I might be losing my mind. But after he nearly drove off the road early in 2006, I had to insist that he get a diagnosis. After several false starts [one neurologist gave him the mini mental exam and said he was fine and to come back in 6 months if he had any more concerns], he was diagnosed with Parkinsons [not], Alzheimers [maybe] and finally rec'd the Lewy Body Diagnosis which fit his symptoms very closely. My heart goes out to him as I know it is a huge struggle for him to get anything done during the day. He is good about taking his meds [exelon and namenda] but does not have the fight to get to a gym or get out with others. We live in a very isolated area and it is taking its toll with the recent huge snows. I guess what I want to say here is follow your intuition and insist on getting an early diagnosis if things don't appear to be right. My heart goes out to all who are dealing with this cruel disease... I saw this bumper sticker years ago and found it amusing: "Of all the things I've lost, I miss my mind the most." It is no longer funny.


Tue Jan 26, 2010 5:17 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Roxanne, my heart goes out to you! Like you, I wondered for years what had gone wrong with our marriage. Was it me, or was he being a complete jerk? Little did I suspect something like LBD! While it was a relief to finally get a diagnosis, the pain gets worse and worse for both of us.

You will get so much support, knowledge and encouragement from this forum! I wish I'd gotten onto it sooner. --Pat


Tue Jan 26, 2010 5:33 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
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Hi Roxanne - sorry you have to be here, but welcome to a great resource for LBD family members and care givers. There is so much info. here and a lot of supportive people. I learned so much in the 10 days or so since I joined. I've done a lot of reading (which makes me feel a lot more prepared for what I'm dealing with) and have made some nice friends. If you can take time to do some reading, I am pretty certain it will help you cope better. And don't be afraid to reach out to the rest of us.
Several of us get on the chat line and there are lots of people exchanging postings on the forum.
Take care, and my thoughts are with you. Lynn


Tue Jan 26, 2010 6:20 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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Roxanne,

Sorry you've had to join us here. Thanks for sharing your words of wisdom.

You might consider joining another online support group called the Well Spouse Association. It's for spouse caregivers (wellspouse.org). I think you'll find that many marital problems have antecedents in neurodegenerative disorders.

And, though you live in a rural area, there are several LBD support groups now in California so you may be surprised that there's one near you! The group I coordinate has 250 members from Monterey to Lakeport to Lake Tahoe. Our meetings are in San Mateo. And the Alzheimer's Association often has dementia support groups in rural areas.

Robin


Tue Jan 26, 2010 6:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
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Robin - how could I find out about the nearest LBD group to Vermont? Thanks, Lynn


Tue Jan 26, 2010 8:21 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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Lbda.org lists local SGs. Alz.org lets you link to a local chapter's website where local SGs are listed.


Tue Jan 26, 2010 9:48 pm
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post New to LBDA
Thank you ALL for your kind words of support and encouragement.
With Much Appreciation,
Roxanne


Wed Jan 27, 2010 1:19 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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See the instructions I posted here on how to find Boeve's "Continuum" paper:
http://community.lbda.org/forum/viewtopic.php?t=1915


Sat Feb 06, 2010 2:03 pm
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post re: new to LBDA
Thank you Robin. I typed "Boeve Continuum" into the search area at the LBDA.org home page, and like you said, it was the first article that came up.
Blessings,
Roxanne


Sat Feb 06, 2010 6:50 pm
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post Re: No longer "New to LBDA"
It has been a while since I last posted. Just became too difficult. My dear husband passed last October. As I mentioned in my original post back in January of 2010, he was diagnosed with Early Cortical Lewy Body Disease at UCLA in 2006. Long story short: he donated his brain to UC Irvine and we recently received the autopsy report: NO LEWY BODIES were found in the hemisphere that was autopsied. They only found evidence for late stage Alzheimer's [tau and beta amyloid protein]. They told me that Alzheimer's can account for the Parkinsonian symptoms which surprised me. He was only 71 when he passed, and I really have trouble with the final definitive diagnosis of Alzheimer's only. I knew it could occur alongside Lewy Body Dementia but never dreamed it would be the only answer. Forgive me for saying this, but I would not be surprised if they diagnosed the wrong brain. His clinical presentation fit LBD almost perfectly! We focused on him having LBD for 7 years, and it is very difficult to believe that only Alzheimer's contributed to his Parkinsonism. So much for getting a clinical diagnosis = very disappointing in my husband's case.
Kyrie Eleison,
Roxanne

_________________
My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?


Wed May 14, 2014 3:06 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
Post Re: New to LBDA
Roxanne, I'm so sorry that even the autopsy results have left you wondering and guessing about a "correct" dx. Sending positive thoughts and a big cyber hug your way, 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 May 14, 2014 9:00 pm
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post Re: New to LBDA
Thank you Lynn!

_________________
My husband's first diagnosis in 2006 at age 64: Early Cortical Lewy Body Disease. He passed in Oct. 2013 at age 71. Autopsy indicated evidence for late-stage Alzheimer's only. NO Lewy Bodies were found in the hemisphere of his brain that was studied..?


Thu May 15, 2014 5:12 pm
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