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 PD/LBD at 60 
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Joined: Tue Dec 31, 2013 12:55 pm
Posts: 16
Post PD/LBD at 60
Just before Christmas, my 60 year old husband was diagnosed with PD/LBD at Mayo Clinic. I suspected both, but it was still tough to get the news. After 2 days of testing, the doctors (neurologist and psychologist) declared him disabled. Being told you can't go back to work on a Friday, when you are expected to work on a Sunday was very tough. But after the initial shock, we were both relieved because he had been struggling for so long to seem "normal." My question to all you others who have been through this is, how much information should I share with him about what he is facing? He knows these are progressive diseases but he has not done all the research that I have and feels "blessed that at least he doesn't have Alzheimer's." I haven't had the heart to tell him what's in store. He's an intelligent man who holds 2 Masters Degrees, but is no longer "sharp" and has no desire to find out more at this time. If he asks questions, I answer them honestly, but don't go beyond what he is asking.

What are your thoughts?

Thanks so much for your support!


Fri Jan 03, 2014 4:08 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: PD/LBD at 60
I think it's best to spare the person the realistic details of what is going to happen eventually if they don't want to know. When my dad would ask me questions that I knew would freak him out if he knew the real answers, I'd say things like "Something is going on in your brain that's causing you to….. (whatever the symptom was)" followed by "I'm working really hard with your drs. to find some medications that will help you." That would satisfy him, calm him down, and let him know I was his advocate in trying to get him help.

Realistically, there was nothing much that could be done by the time he was asking these questions, so giving him answers that made him feel reassured was the best I could do.

I wouldn't give him details that he didn't want to hear about, and just try to be supportive, helpful and who knows, maybe one of these days there will be more meds/treatments that will help our LOs afflicted with LBD.

There's a lot of info. on this forum for those of us who do want more detailed info. as well as a lot of support. If you post questions in the respective topic areas you're more likely to get more responses. Best, 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 Jan 03, 2014 10:38 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: PD/LBD at 60
Lynn is right. There is no point giving them more information than they want. My husband showed no interest in the facts of the disease, even though a scientist, and I spared him. He felt comfortable enough with the 'Parkinson's' aspect of the disease but not with the cognitive side.

_________________
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.


Sat Jan 04, 2014 12:14 am
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Joined: Mon Oct 15, 2012 8:49 pm
Posts: 2
Post Re: PD/LBD at 60
New to the forum, but not new to caregiving for someone (husband diagnosed 7 years ago) with this hideous disease. My husband did not want to know and I, too, spared him the details. He is would not comprehend it now. I am glad that I took the course that I did. But, I am beyond exhausted, mentally, emotionally and physically, carrying all the burden myself.


Mon Jan 06, 2014 6:38 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: PD/LBD at 60
Welcome to you, too, Victoria! I hope you can get some respite so you aren't so worn out. CGing can take a big toll, so I hope you find some ways, even small ones, of taking care of YOU. You won't do anyone any good if you wear yourself out and get sick, or worse. 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 Jan 06, 2014 9:05 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 282
Post Re: PD/LBD at 60
Welcome to the forum Swepps and Victoria! Victoria, this is a great place to let out all the frustrations you're having with the caregiving. It is an exhausting profession and when you're caring for your own LO it's exhausting x10!

Swepps, I would agree with Lynn and Pat. My Mom never really expressed an interest in knowing what was wrong - she never really believed anything was wrong - if there was something wrong it was with us, not her. When we finally came out of a doctors apt. with a diagnosis she really didn't seem to understand what he'd said and didn't really want clarification from us either. I think what you're doing is the right course. Answer what's asked without the details and then be very reassuring.

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


Tue Jan 07, 2014 3:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: PD/LBD at 60
Gail - I had to laugh at your statement "if something was wrong, it was wrong with us". This is so typical of situations where the person with the dx doesn't or can't accept the dx and holds everyone else, or at least family members, responsible for what's going on. It's not funny when you are in the midst of dealing with it, though. Before we knew what was wrong with my dad, he was complaining that "something was wrong with my socks" because he couldn't put his socks on anymore. I bought more pairs of socks, hoping he'd find some style that was easier for him to put on, not knowing that he had ataxia, which was preventing him from bending over, pulling with his arms, etc. And as for the cognitive issues "there aren't any problems." And so it goes with all of our LOs afflicted with this terrible condition. Good wishes to all of you CGs out there tonight, and to your LOs. 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.


Tue Jan 07, 2014 4:20 pm
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Joined: Tue Dec 31, 2013 12:55 pm
Posts: 16
Post Re: PD/LBD at 60
Thanks everyone, for your insight.

My hubby is on an increasing dose of Sinemet and with the last increase (to 1.5 tabs, 3x daily) he is always tired and sleeps most of the day. Is this typical?


Wed Jan 08, 2014 12:56 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: PD/LBD at 60
I don't think it's the Sinemet. With my husband, increases in Sinemet usually meant more alertness, restlessness and combativeness, as well as increased hallucinations and delusions but not more sleep.

_________________
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.


Wed Jan 08, 2014 1:13 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: PD/LBD at 60
It may be coincidental with the natural course of the disease. Have you asked his dr. about it? 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 Jan 08, 2014 3:25 pm
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Joined: Tue Dec 24, 2013 2:37 pm
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Post Re: PD/LBD at 60
I guess I can only give what I know to be true for myself..My husband has LBD/ PD and has been in a NH for four years.The only reason he went in as quickly as he did was because he was extremely aggressive and at the time, a big man. The local police simply said they " couldn't protect me" any longer and the county took over. As for me, I'm 63 years old and was diagnosed just before Christmas with the same.For some time I wanted to blame my cognitive issues on the stress. Obviously , I came to a point that I wasn't convinced any longer and had to demand a scan. Though I live alone I wish I had not demanded to " know" . Apparently it's considered early..I can't believe some of the things I've done . All I'm taking is Cerefolin and have actually seen a difference. Has anyone been told to totally avoid wheat and gluten? I wish I could eat normally and didn't know of this, this soon.


Sat Jan 11, 2014 5:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: PD/LBD at 60
I don't think I've ever heard of a gluten/LBD connection, in the thousands of posts and other reading I've done about LBD, but that doesn't mean that necessarily applies to you. I am so sorry for your dx and hope you can get on meds to help with the symptoms. 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 Jan 11, 2014 5:07 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: PD/LBD at 60
I'm sorry to hear of your diagnosis, Debra. You will certainly be in my prayers. God bless you!

_________________
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.


Sat Jan 11, 2014 5:10 pm
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Joined: Wed Jan 08, 2014 11:32 am
Posts: 20
Location: Canada
Post Re: PD/LBD at 60
My wife (59 years old) is a career oncology RN. She is used to be being in a care giver versus a care receiver role and probably knows a little too much about the disease and the disease process - much like your husband.

I am sorry for your situation and hope that you feel comforted that you are not alone in this journey - we are all here for you and with you.

Be well,

Alan


Thu Jan 16, 2014 12:19 am
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Joined: Sun Nov 10, 2013 9:26 pm
Posts: 49
Post Re: PD/LBD at 60
I was 59 when I was diagnosed with LBD. I wanted all the information I could get. With the "Up and Down" nature of LBD there will be days on end when he feels like nothing is wrong! Then "Wham", you go down hill mentally, start hallucinating, can't remember, and any other list of issues. My neurologist that did the exhaustive work to Dx me, never gave me advanced warning of changes or symptoms. One night, I was having a bad dream and I was in a fight. I needed to punch someone and I did, my wife! Drove her across the bed! We told the neurologist and she said; "I was expecting that!" Her theory was, never telegraph a blow. That works in a fight but not in LBD. And acting out dreams is a major issue for LBD patients. SO, I recommend doing your research together. In the beginning, LBD is not terribly bad, at least for me. But now, a few years in, it get's bad and I appreciate knowing what is going on and why. Soon, I will not know why things are happening!

I am sorry for your Dx and you are in our prayers.


Sun Jan 26, 2014 11:01 pm
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