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 New to Lewy body 
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Joined: Fri Aug 17, 2012 9:09 pm
Posts: 1
Post New to Lewy body
Hi my name is Tammy I am 53 and found out I had Lewy body in June,7 th at That time the doctor said I could not go back to work any more and I had to quit driving , which most times I think I was a good. Driver, but I only went from home to work. we live way out of town in the bush so now i an house bound. I was first put on aracept now that was changed to exelon patch. the doctor thinks this will help because I see 2 young women in my kitchen and I can hear and smell them cooking. At first this drove me nuts I was worried they would lock me up when I told them.My doctor had never even heard of this, but I think I worrie about my husband the most because of everything he has to deal with now, I use to do all the shopping and banking now he has to.


Mon Jan 28, 2013 5:48 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New to Lewy body
Tammy,
Welcome to the LBDA forums, I am sorry that you have been told you have this but I think Exelon is a good choice of drug to help you, Sadly this forum is mostly made up of caregivers but we have a few LBD'ers here too but they don't post often, we do have a private area and that is only for people with LBD so if you think you would like to have access to that area please let me know as our regular members can't gain entry to it.

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Irene Selak


Mon Jan 28, 2013 10:06 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New to Lewy body
Welcome to the forum, Tammy! I hope you will find help and support here.

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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.


Tue Jan 29, 2013 1:58 am
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Joined: Mon Mar 21, 2011 11:28 pm
Posts: 26
Post Re: New to Lewy body
Welcome, Tammy. This site is a wonderful source of information on LBD. You mentioned that your doctor had just prescribed the Exelon Patch. My husband, who has LBD, had a year of "extra" people in the house. He was diagnosed correctly in 2010 and put on the Exelon patch. He hasn't seen an "unwelcome" visitor since then. His doctor started him on a low dose and when he was tolerating the medicine raised him to 9.5 mg. So I hope I will see you in some of the other forums. It would probably help your husband to read and post as well.


Tue Jan 29, 2013 11:41 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: New to Lewy body
Welcome Tammy and I am so sorry for your diagnosis, but since it has been caught early your drs. should be able to help you with new drugs and therapies. All the best to you. It is very difficult for everyone. Lynn

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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.


Thu Feb 07, 2013 10:26 am
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Joined: Sun Feb 10, 2013 5:56 pm
Posts: 4
Post Re: New to Lewy body
Hello, my name is Ray and my wife, @ 80 has been diagnosed with LBD this past month. I am still stunned because as late as mid-October last year she was physically active playing golf 3 or 4 times a week, playing competitive bridge 2-3 times a week and chairing committees at our Church. While I had been secretly fearful that something was going on with her, she was still fully functional. Late October she was looking forward to a golf day with friends. We got as far as the 3rd hole and she felt dizzy. We aborted that game and she went to bed for a long nap. Following that, she was fully "recovered". The next morning I took her to the local ER, fearing a stroke. Within a week of that, she couldn't walk, stand or speak. Her whole body was trembling. First diagnosis was Parkinsons Disease. Within 12 hours of first 1/2 tab of sinemet, she recovered stability, cognition and speech and improved from there. New year's eve she had a TIA stroke, but recovered very quickly in hospital. Then her neurologist put her on Namenda. With two beginner doses, that proved poisonous. She sunk lower than earlier low and has been in a rehab hospital ever since, with some recovery due to meds. I love this woman desperately and am physically strong and fit enough to be her care giver. I want her home as soon as her fall risk is reduced some. I want to know if my heart is outweighing my common sense. Can I care for her at home when she sinks to lower levels of cognition and motor control?


Sun Feb 10, 2013 9:04 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New to Lewy body
Welcome, Ray! I'm so sorry you have to join us in this awful experience but very glad you found us. I cannot answer your question about your wife's care but it seems you should be given the chance to try. If you do take care of her at home, I pray you will get someone to come in to help once or twice a week so you can get out for a few hours. I waited much too long before getting help, as my husband was violently opposed to it. Please take care of yourself. God bless!

_________________
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.


Sun Feb 10, 2013 10:20 pm
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Joined: Sun Feb 10, 2013 5:56 pm
Posts: 4
Post Re: New to Lewy body
Thank you, Pat. I have been reading many posts and they frequently contain abbreviations that seem normal part of the forum language. Is there a glossary that translates things like: SNF; PSP; FTD; etc.? I gather that LO means "loved one".


Mon Feb 11, 2013 10:54 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New to Lewy body
I don't know of a glossary but SNF=skilled nursing facility; PSP=progressive supranuclear palsy; FTD=fronto-temporal dementia; ALF=assisted living facility; w/c=wheelchair; MIL=mother in law; SIL, son in law, etc., etc.

_________________
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.


Mon Feb 11, 2013 11:19 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3378
Location: Vermont
Post Re: New to Lewy body
Welcome Ray and sorry about your wife's recent diagnosis. If you can care for her at home for a while longer, that will probably be good for both of you. As Pat says, give yourself a break and get a CG to come in a little each week. As her condition deteriorates she will need more and more assistance, and as you can read in many places on this forum, your sleep may get very compromised because of her health issues. So, just be aware to not wear yourself out physically or emotionally. You might want to investigate care facilities well before she may need to move to one. What is super-stressful is waiting until there is an emergency and then having 24-48 hr. to find a suitable facility. That will not be good for you or her. Many of the nicer places have waiting lists, so checking them out, getting her name on a wait list doesn't commit you to moving her there now, but it may be a big help if you need to move her in the future. There are a few horror stories on this forum where a LO has a huge downturn, goes to the ER, they won't release the person back home, and then there is a mad scramble to find a place. That is a really stressful place to be! And it may be that between you and people coming in to help with her care, you won't need to move her. All the best, stop back here often, 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.


Mon Feb 11, 2013 2:26 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: New to Lewy body
Welcome, Ray, and so sorry to hear of your wife's diagnosis.
You have already had so much good advice that I won't try to add much.

You might take heart from hearing about my dad, who just turned 97 this week. He was able to take care of my mother, first in their independent living apartment in a continuing-care retirement community, then with a little caregiving help a couple of mornings a week, then in an assisted living setting with more help. She finally moved to a dementia special care unit a few weeks ago, in the same building but different floor, so he can go several times a day. He probably waited a little too long, but it was important to him that she be with him as long as possible. He is relatively healthy for 97 though increasingly frail, and I think the worry and lack of sleep have compromised his health somewhat over the last 6 months or so. Even at his age, though, more was possible - with enough help, and with my husband and me and my daughter's family all within 10 min of them - than one might think. The trick was to know when he had reached his limit.

So do get help, and plan on needing more, and plan ahead for the time when you will likely need to consider placement outside your own home. And, from my own experience, the help and advice you can get from folks here is invaluable in facing this very difficult situation. Take good care of yourself, too -
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Wed Feb 13, 2013 4:54 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New to Lewy body
Welcome Ray,
I am so sorry that you and your wife have to go through this but we are a forum made up of many different walks of life and I hope you get some of the much needed support here, none of us has th asnsers we just all hope and pray a great deal ! I do hope that what is going on with your wife is juts medication induced and can be fixed as the meds leave her system and if you are able to get her back home can you get someone in to help withj her many needs ?

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Irene Selak


Thu Feb 14, 2013 8:59 pm
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Joined: Sun Feb 10, 2013 5:56 pm
Posts: 4
Post Re: New to Lewy body
While this whole subject is most disquieting, how very comforting it is to know there are knowledgeable friends among you who are walking or have walked the path that lies ahead. Many of you, I am sure, know the intimate emotional bond that 56+ years of marriage brings. Eating, sleeping or watching TV or a DVD alone fails to satisfy as it once did. I can understand why many men resort to eating TV dinners. If the meal cannot be enjoyed, why the fuss to make it attractive and tasty. Since retirement 17 years ago, I took over the cooking and frequently took pride in my results, if it pleased my wife. Now for past 3 months a quickly heated can of beans or a cold chicken leg meets my need for body fuel. What is most difficult is the look on my wife's face when she is looking away and obviously contemplating what is happening to her. Today she learned that our application for a handicap parking placard resulted in the Registry of MV directing her to turn in her driving license. She silently took it out of her wallet and handed it over, reminding me of a fighter resigned to defeat. How sad for such an active and intelligent woman. My loneliness is nothing compared to her quiet despair. I have to develop ways to lift her spirits and give her hope for pleasant things to come--visits from our children, grandchildren and friends, dining out, going to a movie. But first I have to get her stable enough on her feet to come safely home.

Sorry, folks, I don't want to get maudlin on you.


Fri Feb 15, 2013 10:44 pm
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Joined: Thu Jan 17, 2013 9:22 pm
Posts: 6
Post Re: New to Lewy body
Hello,
I would find it hard to believe that one person could handle the rigors of careing for a LBD person through all the stages of this disease. but I would try if it became neccessary. and try to not beat myself up if it was more than I could handle. I would also like to ask for someones advice on how to change my sign in name as it is my real name and I have contemplated this may cause me problems in useing this forum. I didn't see how that may be done in the user control panel, but I will look again.Thank you.


Mon Mar 18, 2013 11:56 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New to Lewy body
bicknell,

If you go to the page where it has all the different sub forums you will see at the very top Important notes to new visitors look way over to the right and click on the red lettering and that is our forum administrator who makes many of the changes. I hope that helps.

My husband was sick approx 9 yrs and really sick about the last 4 yrs and then the last 18 months he was bed ridden and I cared for him with little help and it was very hard but it can be done, if I had to do it again I might have picked placement as I ended up with all the problems physically from all the lifting, it really was extremely hard on my body but I don't regret it either.

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Irene Selak


Wed Mar 20, 2013 3:14 pm
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