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Joined: Thu Jul 11, 2013 6:25 pm
Posts: 5
Post Hi
Hello everyone.
My wife ,55 years young, has been diagnosed with LBD. She intially was feeling odd and effects have been progressing for about a year and a half. We went through all of the initial tests and all showed she was normal. Our first neurologist just worked on her nerve and balance issues. MRI's showed some brain atrophy which he chose to ignore. She slowly continued to get worse. I finally wanted a second opinion and got a nuerologist who conducted specific tests that showed the Lewy bodies present in her brain. He also said there is no way to be a 100% sure until afterwards. We just found out last week. She doesn't have all the symptoms, especially alot of the demention issues as of yet. She is on a mix of Alzheimer and Parkinson's medications. I also have her drinking Ionized water and trying to keep her active.We went to a Neuro Psychologists and he said she is in the lower 1% of the graded results. I dont feel she is that bad as of yet. She is from Germany so that may have lowered the tests results.
She is able to move on her own just has, at times, balance issues. She still can play card games and computer games. She doesnt want to excercise except a limited amoutn of house work and when we go out I keep trying to make her walk long distances. I also emplore her to excericise as much as possible and work mind games.
I have read that excercise has helped to slow it and am hoping the drugs wil help also.
She has problems writing and utilizing utensals. She also has a torn rotator cup, due to an old progressing injury, she will have surgery on the 30th. I hope the physcial therapy helps motivate her to exercise. As always I will be there as much as I can.

I am thanks you for hosting this forum and hope it will me and my wife and that I can provide others with the needed support.


Fri Jul 12, 2013 8:00 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Hi
Hi Joe - welcome. I'm glad you found this group and so sorry for your need to be here. Although there doesn't seem to be hard scientific evidence (yet), there are lots and lots of reports about the use of general anesthesia and sudden onset or worsening of dementia. I.e., if there is any way to avoid it, or tell the anesthesiologist about your concerns that may help your wife. If you do a search on this forum on "anesthesia" you will see how many people have noticed that there seems to be a correlation with onset of dementia symptoms or worsening of dementia symptoms. I need rotator cuff surgery myself and have been avoiding it because of the anesthesia issue and a dad who had LBD when he died. Has your wife tried PT and regular exercise for her shoulder, or is she not able to do that? This helps me IF I am fairly religious about doing it, which I am not always...

Come back here often - you will get lots of support, and when you have specific questions or concerns you can go to the appropriate topic area to post. That way you'll be more likely to get responses.

Read, read, read as much as you can. It will be helpful to you to have info. as other symptoms and behaviors develop. It is good that your wife was diagnosed early and is on meds already. It seems like those whose LO's are treated early do better with the meds. I hope you both make as much out of life as you can, while she is still mobile and can enjoy activities.

Good luck to you both. She is very young. 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.


Fri Jul 12, 2013 8:14 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hi
Welcome to the forum! So sorry you have to be here--especially with your wife being so young! :cry: But I'm glad you found us. We're all in this mess together and need each other's support and wisdom.

_________________
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.


Fri Jul 12, 2013 2:25 pm
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Joined: Thu Jul 11, 2013 6:25 pm
Posts: 5
Post Re: Hi
Thanks for the welcomes, support and info. I will defiantly discuss the risk of anesthesia used for the operation with my wife. We have preop prep next week and will express our concerns. Her young age is really what is so sad. I am hoping we have found out soon enough so that the drugs she is on will help slow it down and give us more quality time together.


Fri Jul 12, 2013 2:50 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Hi
I hope so, too, Joe!

_________________
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.


Fri Jul 12, 2013 3:41 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 275
Post Re: Hi
Welcome to the forum Joe! Your wife is really young to have to start on this. She's lucky you're on top of it and finding this support and info! It's a journey - come back here any time for support and answers to questions. There's lots of experience to draw from here!

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Sat Jul 13, 2013 12:59 am
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Joined: Thu Jul 11, 2013 6:25 pm
Posts: 5
Post Re: Hi
Rough last 24 hrs. It started out good we were by the pool and she was in good spirits. In the evening she had some wine to take the edge off and fell over the coffee table. I am worried she will accidently hurt one of the dogs. They love being close to us and don't understand that they maybe in danger. I removed all of the wine and beer in the house so we wouldn't be tempted. Don't want any complications like broken bones or more injury.
This morning I brought her to get a facial and get her nails done.
We went to lunch and she got frustrated due to not being able to cut her steak. I want her to try as much as possible to do things herself. I can tell it is slowly sinking in. She doesn't like physical activity but I get on her about how important exercise is....
Went to Barnes and Nobels got her some magazines, jig saw puzzles, and a few games to play. She did the dishes and now is watching Tour De France while she is exercising her hand.
Feeling very stressed and alone. Trying to stay positive for her.
Does anyone know how fast the symptoms progress? I thought she was doing better but it looks like she is rapidly getting worse. Maybe due to me noticing it more and me being off today. This is the first week she is on the actual intended dosage of the drugs. They do tend to make her a little dizzy.

Sorry to be such a bother...


Sat Jul 13, 2013 3:09 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Hi
Joe, the progression of symptoms varies a lot from one person to another, so it's not really possible to predict how your wife will progress. Also, it can fluctuate like a rollercoaster, up and down, over periods of months, weeks, days and even hours. So over time, CGs learn to adjust to the unpredictability.

Are there any support groups in your area? I think it helps to talk with other CGs. People who aren't doing this really cannot understand what it is about, even though they may think they can.

Hang in there, you are doing a great job and your wife is fortunate to have a caring husband like you.

Julianne


Sat Jul 13, 2013 5:34 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Hi
That was probably a good idea to eliminate alcohol - drug and alcohol interactions, dizziness from meds, and other effects of alcohol on a person with dementia is not something you'd want to do.
This disease is much a like a very unpredictable roller coaster, and some of our LOs experience significant, sudden decreases in abilities literally over night. Perhaps she won't suffer that - let's hope not.
Come back any time really, and don't worry about being here "too much" or asking "too many questions". As you can see, some of us have posted hundreds or thousands of times!
Remember to take care of yourself, too. 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.


Sat Jul 13, 2013 9:03 pm
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Joined: Thu Jul 11, 2013 6:25 pm
Posts: 5
Post Re: Hi
Much better tonight. She was more alert and balanced. Very happy when she went to bed. The stopping of even a few glasses of wine seemed to improve her spirits. Thank you all for your input and concern


Sat Jul 13, 2013 10:15 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 275
Post Re: Hi
Hi Joe, I think that was the hardest thing for all of us to get used to with my Mom - the ups and downs. One week my Mom could walk 5 miles to the mall and the next she couldn't get out of bed. It definitely is a roller coaster! You've got to enjoy the good times and get through the others.

_________________
Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Mon Jul 15, 2013 1:05 pm
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