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 Early/Mid/Late Stage LBD 
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Early/Mid/Late Stage LBD
When I read posts referring to early stage LBD, or mid or late it is difficult for me because how do I when one stage ends and another begins...especially with the fluctuations of this disease. Is there anyone out there who would like to share their thoughts on this issue. My husband was diagnosed in April of this year, although I feel it started at least 2 years ago and probably longer. He will be 79 this week. He is on 125 Seroquel, 9.6 Evelon Patch and 1/4 Sinemet 3x a day. (Just beginning the progression of Sinemet providing he is able to tolerate it.) He sleeps a lot, is able to feed himself but not prepare the meal, able to shower if he is not feeling dizzy at the time. I help him dress, drive him everywhere and only leave him for short periods of time...grocery store and a walk everyday. Somedays he is pretty much unable to do much other than feed himself and take care of his bodily functions...other days somewhat more. Yesterday he even washed the dishes for me...the first time in months. It so touched my heart as I had told him to leave and I would do them after I rested. This is so hard for a person like me who has always been one who can deal with what I know is on my plate. With LBD the plate keeps changing, and there are no definitive answer except one....there is no cure. That being said I am so grateful that he still has his sense of humor and is able to show me and tell me he loves me.

Susieg


Sun Sep 16, 2012 2:44 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Early/Mid/Late Stage LBD
Susie, it really is difficult to define the stages. And Lewys often bounce back to an earlier stage and then 'forward' again. The progress, though not as neatly linear as that of Alzheimer's, is nonetheless noticeable from year to year. My husband was about where yours is now in 2007. This excerpt is from the LBDA information page [which you can access by clicking on the logo above left]:

'Defining the stages of disease progression for LBD is difficult. The symptoms, medicine management and duration of LBD vary greatly from person to person. To further complicate the stages assessment, LBD has a progressive but vacillating clinical course, and one of its defining symptoms is fluctuating levels of cognitive abilities, alertness and attention. Sudden decline is often caused by medications, infections or other compromises to the immune system and usually the person with LBD returns to their baseline upon resolution of the problem. But for some individuals, it may also be due to the natural course of the disease.'

Infections and bad medications both brought my husband near death at various times in the course of his disease.

_________________
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 Sep 16, 2012 4:08 pm
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: Early/Mid/Late Stage LBD
My husband has had 2 very serious infections too when we didn't think he would make it. Last April he was taken off a plane upon arrival in Dallas by paramedics & taken to the hospital. Many days I would think he is in mid stage but not today...it's a good day. At least not at this point in the day. So many unknowns, right? Thank you for your fast reply.

Susieg


Sun Sep 16, 2012 4:29 pm
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Early/Mid/Late Stage LBD
Ted has been followed by Mayo clinic for about 3 years, and the VA for about 5. Last September, I took him to both places due to my worry of a big decline (again). They recommended beginning hospice. In March, things got so bad I had to place him in a nursing home (he'd been on hospice at home since last October). And, just about 2 weeks ago, he came off of hospice because he's stabilized and doesn't meet the criteria any longer (never mind 2 hospitalizations and UTI plus a couple of other falls & delusions/hallucinations too numerous and persistent to mention). As little as a month ago, he was having big problems and I thought I would never be able to take him out on short trips again. This weekend, we had our first grandchild. Ted was able to come to the hospital and sat holding his grandchild for an hour (yes, they both napped during some of that time). It was beautiful. Truly a roller coaster.


Sun Sep 16, 2012 9:41 pm
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: Early/Mid/Late Stage LBD
WOW!!! Thanks for the background. Similar for us but shorter and not as intense. May I ask his age? If inappropriate please ignore. Is he on Seroquel? Is he in AL or NH? Thank God for this website & veteranaid.org.

Susieg


Sun Sep 16, 2012 9:56 pm
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Early/Mid/Late Stage LBD
He just turned 57 in February. I can't tell you how sad it makes me at times. But, I hold on to what I have while I can. It's a tough disease. Even tougher when a doc (VA psychiatrist who saw him in 2009) commented to me this year that she didn't expect him to live this long. I've still got a lot of happy memories and hugs. He's still a special person, especially to me.


Sun Sep 16, 2012 10:24 pm
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Early/Mid/Late Stage LBD
And, its a nursing home. Very kind people there.


Sun Sep 16, 2012 10:25 pm
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: Early/Mid/Late Stage LBD
You & your husband started this journey none of us wanted to be on at such a young age. So very sad. I am 71 & my husband is 79. How long has he been in a NH or AL? Last wk the VA dr asked him how he felt about having LB & he said he wished he didn't but that he has had a good life. In Dec our granddaughter gets married in IN & we are in TX. He can't fly & I am so torn about him being able to go or not. We drove there in June & on to VT for 2 months but we it was too far & too long away from home. Any experiences out there concerning travel?

Jeanted, you have touched my heart & I thank you for sharing.

Susieg


Mon Sep 17, 2012 7:40 am
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Early/Mid/Late Stage LBD
Thanks so much. You know how this forum has given us the strength to go on during some of the darkest days. Travel has been by car. One time, on our prep from NC to the Mayo Clinic in Florida, I'd gotten everything ready and picked up my Mom (always have support with you if you do travel). Ted looked at me and asked me when we were going to get the other Jeannie...what do you do but laugh. :lol: A sense of humor is a must, pior planning always, no expectations of meeting any deadlines, lots of patience, lots of extra clothes, rest stops with family bathrooms, are just a few. I also always give him a heads up according to how he's doing. If he's not doing so well, I don't say too much. If he's doing pretty well, I can tell him more. Each has its own merit. Right now, I'm not sure if I'm taking him to a family wedding at a church 2 towns away--but I may try. Haven't talked to him about it because I don't want to let him down or set my goals too high. At any rate, someone in another post had the best advice to make sure you take video and bring it back. The expression on Ted's face was priceless when I shared the video of the birth of our grandchild.


Mon Sep 17, 2012 6:18 pm
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: Early/Mid/Late Stage LBD
What a great post. My decision for the trip is no decision for now. For me it works best if I don't tell about dr visits until the day we are going. It is great when we can laugh, isn't it?


Mon Sep 17, 2012 7:35 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: Early/Mid/Late Stage LBD
A year ago last April, my husband and I traveled together by motorhome to see our son in Maryland (we live in California). I did the driving. Had no problems with the coach and no problems with the driving per se. I agree that you should have someone with you. I didn't and it was rather stressful. He couldn't help navigate, couldn't get himself a soda or me a snack or anything while I drove. If I needed anything, I had to find a place to stop and get it myself. I also had to take care of his needs too. He was always worried that we would get lost. He wasn't as disoriented then as he is now. Had a few issues at my son's, e.g. needing help finding the bathroom. We had an issue with the weather along the route too and he panicked very easily. The last day, we were up at 2:30 a.m. to make the drive home before the wind came up. I won't take a trip like that again without help. Recently, we took a trip up to Reno. His disorientation was in evidence. He was ok once we got at our campsite, but all the way home he thought I was on the wrong road. He didn't recognize anything and I couldn't convince him we had traveled this road many times before. We tried one last time this past weekend. We went to a campground we had been to before, near my sister, and spent a lot of time with her. He was fine the whole way there and back. The answer is close excursions to familiar places for short durations. Anything longer needs a copilot who can assist when needed.

I can identify with your concerns about "stages." This is all very scary for the caregiver and the patient. I'm near 65 and my husband is almost 77. He is very aware of what this disease is doing to him and so far, is not the least bit humerous about it. I try to get him to see the humor in some of the things he's experiencing and also offer love and support during the scary times. Like you, I worry about what's in store.

Glad you found this forum and hope to stay connected. God Bless,
Terri

_________________
Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Mon Sep 17, 2012 11:11 pm
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Joined: Fri Oct 28, 2011 1:31 pm
Posts: 29
Post Re: Early/Mid/Late Stage LBD
It is difficult to say what stage anybody with lewy body disease is in. The plaques on the brain affect everybody differently.

My mom was 70 when she started showing signs of dementia. When she would get sick or fall it seemed like she wouldn't pull out of it, but she usually did. She would drop way below her baseline and then return to a new lower baseline. This last time, she got pneumonia and went to the hospital, then rehab, then hospice, then my home, and passed away one week before she turned 75. I honestly thought that we had about two years left. But when she got pneumonia - either from the sickness of pneumonia, the medication, or the disease (lewy body) - she couldn't swallow anymore. This drop was the one that she couldn't recover from.

The previous year we (my husband, my children, and I) had taken her on several big trips by car. Although the trips were challenging and tiring, I will always cherish these memories. My favorite memory was her joy when riding in a beach wheelchair on the beach at sunset. All I can say is that you never know when the end is coming with lewy body disease. Make the most of the time you have.

During the really difficult times (and there were quite a few), I relied on this website for advice and encouragement and hope. I hope it helps you.


Sat Sep 22, 2012 3:54 pm
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: Early/Mid/Late Stage LBD
Yes, this website is and has been a tremendous help. It's too easy to feel that we are alone in this but then I open up this website once again and I know we are not. Our son came to visit today and the three of us laughed....good times. This year we have traveled a lot....sometimes probably too much, but wonderful memories in Florida, Missouri, Indiana and Vermont and all by car. We hope to go to our granddaughter's wedding in December in Indiana...it's a wait and see situation. If so, we may all meet there for Christmas...again a wait and see. Thanks to all of you for the support, experience and knowledge you share here.

Susieg


Sat Sep 22, 2012 7:58 pm
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