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Joined: Tue Feb 10, 2009 7:21 pm
Posts: 4
Location: cary, illinois
Post New to all this
I am so glad I found this sight. Although I have been reading the postings and most seem to deal with family members in their late 70's or 80's. We, and I say we because the more I read about LBD the more I think this effects not only the patient but the loved ones as well. My husband of all most 25 years (in one month) and who turned 61 on the 10th has been diagnosed with LBD, although his neurologist is reluctant to make it a firm diagnosis. He suffers for night terrors and sees people when none are there, so far, he says they don't scare him. After reading some of the information here I feel that a diagnosis of AD might have been better, longer maybe but better. The Parkinson's side hasn't really presented itself as yet and I think that is the reason the neuro won't confirm the diagnosis, will it ever?.
My questions are many. As I have read, everyone is different and no two LBD cases are the same, what can we expect? I think this has been going on longer the original 6-8 months we thought, although I think we thought it was just "sometimers" at the time, it's the dementia side the has manifested itself first, a man who could read 1500 words a minute with 95% comprehension, enjoyed a good book, now only reads the paper. Can't remember the name of simple everyday objects, no's how they work just not what their called. Puts something "where he's sure to" remember and tears things apart looking for them.
What are the stages? I know that's a question that can't be answered. How long before he's not able to do his job, should he retire early or wait and go on long term disability? Where do I turn for answers.
Thank you for reading and I'm sure I can find the answers I seek with your help. It is so nice to know that "we" are not alone.


Mon Feb 16, 2009 5:14 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Dear pms,
Welcome to the LBDA forums I am glad you found us and I must caution you to slow down a bit, there is no doctor that can actually confirm LBD for sure. Most hallucinations aren't scary for the LBD'ers they seem to be small children and small animals.LBD is a disease that effects the entire family. You say the Parkinson's side hasn't "really" presented itself, well are there any motor problems at all ?? Your best defense is self education and now is the time you should be discussing the future. You have come to the right place for many questions so ask away, try and post in the specific area's so more people will read and be of help to you. Again welcome!

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Irene Selak


Mon Feb 16, 2009 10:24 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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Dear pms,

Parkinsonism is not required for an LBD diagnosis. Perhaps your husband's MD is not familiar with the diagnostic criteria? We have people in our local support group whose loved ones have not yet exhibited parkinsonism.

They call AD "the long goodbye." I don't know if that's better or worse for the patient, or better or worse for the caregiver. I do think it's always "nice" to think that "my loved one has a nasty disease X but it could've been worse as he could've gotten nasty disease Y."

The LBDA's website lbda.org has lots of good info, and addresses your questions about symptoms (including fluctuating cognition), prognosis, etc. I encourage you to read as much of that site as you can as well as the first page of posts in each of the topic areas on the Forum.

You might post your specific questions under the Symptoms/Diagnosis heading as you may get more response there.

Good luck,
Robin


Tue Feb 17, 2009 4:07 am
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Just wanted to let you know that my husband has had LBD for about five years and still shows no signs of Parkinsons's. Also many patients with LBD have co-existing Alzheimer's.

As for retirement vs. disability, you might want to post that question on the "Financial, Legal and Social Service Needs" list. I'm sure others here have faced that issue and can give you first-hand information.

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Renata (and Jerome-in-Heaven)


Thu Feb 19, 2009 2:06 pm
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Joined: Thu Feb 19, 2009 12:45 am
Posts: 103
Location: St.Paul
Post new to this forum
My husband was diagnosed with LBD a few weeks ago. I finally found a great doctor who was seeing what I saw for years. yea! The dementia began back in 02-03 and the shuffling, slow moving began shortly thereafter. At first thought I it was AD but he didn't "fit" in most of the descriptions because he would have very good days and then have bad periods. I realized he had LBD months ago and was glad to figure it out. I take him to work with me everyday. Getting more and more difficult to do. Catholic Charities has a lady that will be coming to our home to sit with him 1 day week. He can no longer dress, toilet himself nor a host of many other things. He was a master plumber and now doesn't know what to do in the bathroom and what happens or what he should do when he poops! Seroquel is a great drug and I am glad he can tolerate it. He now goes to sleep by 9pm and is only up once in a while during the night. Before he was up alot. Hallucinations are much better, although he talks to "people" all the time. Thank you so much for your site. I know it will help me alot. I am unable to go to groups as I don't have someone to stay with him very often. We have 8 children and only 2 are around to help as best they can. Amazing how they disappear. Thank you, thank you for being here. I love you already.


Fri Feb 20, 2009 1:33 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Heycon,
Welcome to the LBDA Forums, I am glad you found us and I know you will receive much needed information and support here, There is a spouses only online support group that might be helpful to you also. Here is a link:
http://groups.yahoo.com/group/LBD_caringspouses/
Good Luck !

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Irene Selak


Fri Feb 20, 2009 1:41 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Thanks for sharing your story. How did you arrange for help from Catholic Charities?

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Renata (and Jerome-in-Heaven)


Sat Feb 21, 2009 3:05 pm
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Joined: Thu Feb 19, 2009 12:45 am
Posts: 103
Location: St.Paul
Post Catholic Charities
I called and spoke with them. Met with a lady and needed to fill out financial information. We met the criteria - not much money left and no assets anymore as business is bad. They have volunteers who will come out or take LO places. As long as they are able. Yesterday I met a woman who lives nearby who may come to sit with my LO one morning a week. They cannot do any medications or physical things - only sit with or take somewhere as long as LO can manage. She will make him lunch and then I will take over.
Connie


Sat Feb 21, 2009 3:33 pm
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