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 Introductions 
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 87
Location: Canada, Ontario
Post Introductions
HI; I have been on here a short while but don't know if my Introduction worked as I can't find it. My husband was dx with PD in 2003 but had REM sleep disorder prior to that for a few years, and bad reactions to anesthetic and antipsychotic meds, and one med added for the parkinson's in addition to Prolopa. He has had noticable memory problems since 2007 but more than likely was compensating prior to that as some odd lapses in memory happened before (like forgetting to pick me up from work and not being in reach to call. I am a retired nurse so I am at present taking care of him alone. Family is far away as his son is 2 hours drive away and one of my sons work in Wesern Canada and the other lives in Honolulu, so physical support is lacking. At present my husband is like a 3 yr. old child with language and vision problems. Follows me around and if he can't see me, even in the same room, he is calling to me. This is crazy making but managable. It certaily is easier to look after someone for 8 or 12 hours that 24/7.


Sun Feb 09, 2014 4:05 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 282
Post Re: Introductions
HI Anne,
Welcome to the forum! Glad to see you found the Introductions thread! Sounds like you have your hands full there so keep chatting on the forum here as one form of support. Then, I would be in touch with healthcare and see what they can set up for you. You should be able to get someone coming in to help at least a couple of times a week. And if you're OK with baths, etc. than you can use the companion care to get out of the house yourself and do something just for you. The caregiving can become all encompassing if you don't step back now and then!

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


Sun Feb 09, 2014 7:35 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Introductions
Welcome Anne, and come here often for support, advice, suggestions, whatever you need. We've all BTDT or are currently going through being a CG. 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.


Sun Feb 09, 2014 9:25 pm
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 87
Location: Canada, Ontario
Post Re: Introductions
Thank you Gail for the good advice. My husband doesn't want help coming in and since he is still judged to have capassity to say "no" I can't by law forse him. I can if I just say that I refuse to care for him anymore but at this time I could not do that. I realize he doesn't know his situation, Of course when the Nurse Case Manager comes he is in Show Time and she doesn't get a true picture. We are getting a referal to a Geriatric Psychiatric Memory Clinic to get a definitive diagnosis and try to find out at what level other that the present one of "Moderate dementia" that we have and to have all meds reassessed. Hopefully when they report back to the Case Manager things will change. It could be just like the Day Program that after someone comes in, he will start to like it. Anne


Tue Feb 11, 2014 10:02 am
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Joined: Mon Aug 23, 2010 5:17 pm
Posts: 1
Post Re: Introductions
Dear LBD friends and family; My beloved husband died of Lewy Body on April 28 2012. This site provided an enormous amount of help during his illness, and I'm still so grateful. I'm also a writer, and I've written a personal essay about my experience with him, with LBD and with the year of his death that will appear in the April issue of Redbook Magazine. I just wanted you to know since it's so important to get the word out any way we can.
My Love, support and prayers are with all of you.
Pam Lewis


Wed Feb 12, 2014 10:56 am
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Joined: Sat May 25, 2013 3:53 pm
Posts: 282
Post Re: Introductions
Hi Anne,
We found that with my mom. She did not want anyone coming in at first but after home care started coming she got so she loved having someone else to talk to. Then, when we finally convinced her and my Dad to get a nanny to help take care of Mom, Mom just loved it. You couldn't beat the one on one attention - it was just what she needed! And it gave my Dad the break from caregiving that he needed as it was wearing him out! It was the geriatric assessment team that finally figured out the LBD for my Mom so hopefully they'll be able to better assess your husband as well.

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


Wed Feb 12, 2014 1:12 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 282
Post Re: Introductions
Hi Pam,
You've posted under Anne's thread so your note may get lost here. Post under the main title Introductions (this is Anne's subtitle) and your note will show up on the top level. I think everyone would be very interested to read your article and it's a great way to get the word out about LBD. Thanks for posting this.
gail

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


Wed Feb 12, 2014 1:16 pm
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 87
Location: Canada, Ontario
Post Re: Introductions
Hi Pam; I very sorry to hear of your husband's passing. I know that this is hard for you but he is at peace. This is not an easy life but you know you have done your best for him. Take care of yourself. Anne


Wed Feb 12, 2014 6:20 pm
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Joined: Mon Jan 27, 2014 11:05 pm
Posts: 12
Post Re: Introductions
welcome Anne. I haven't been a member that long I use to just read through the post for information, but it is a great place to find answers and new friends. once we realize we aren't alone it helps tremendously. good luck with your journey.
Good Bless
Mary


Wed Feb 12, 2014 9:55 pm
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Joined: Sun Mar 24, 2013 7:44 pm
Posts: 3
Post Sad Partner watching the loss of a Beautiful Mind
Hi, My 64 year old husband was diagnosed two years ago with LBD after a year of great emotional turmoil and angry spells mixed with nightmares, isolated hallucinations(2-3), and dizzy spells. He is a well educated, very bright and still very verbal guy but as the past two years have passed, we have moved into more and more withdrawal, physical ramifications and now the anger outbursts are frightening. I feel I have had great medical support with the diagnosis and support from Johns Hopkins in Baltimore and our local neurologist. Along with the Exelon patch, he was recently placed on a titrating level of Lamotrigine to attempt to control the outbursts. He is still very intact cognitively and makes decisions along the way on his own very willingly-stopped driving two years ago, asked me to figure the restaurant tips last March, now lets me do most of the vacation planning but still does terrific research places, activities for us to explore.

When I educated myself about LBD over the past two years, I envisioned him being much more debilitated before any outside assistance/placement would be necessary. I had no idea that he would still be so very aware of his losses and limitations. The neurologists have told him they have never had a patient who could describe with such clarity what his brain is going through. He is a published author and I guess he is still retaining that professional ability of describing.

I am 61 and lost my previous husband at 49. He died two months after a kidney cancer diagnoses. This is so similar to that experience, only in slow motion.


Thu Feb 13, 2014 2:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3406
Location: Vermont
Post Re: Introductions
I'm glad that your husband is still retaining some high levels of functioning. Let's hope that continues for a while longer. Don't be surprised, though, when "show time" starts. When it does, if you document what's going on a home when others aren't around, and give that info. to his drs. they may be able to tweak his meds to help him with increasing symptoms. I think all of our LOs have done show time and it's very frustrating when we CGs know what our LO is going through, yet when they do showtime, others don't believe us, and that is not helpful for us or the person with LBD. Sorry for what you all are going through. Take care of yourself so you are strong and healthy. 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.


Thu Feb 13, 2014 4:43 pm
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Joined: Sat May 25, 2013 3:53 pm
Posts: 282
Post Re: Introductions
Hi Diane, Welcome to the forum. I know what you mean about "slow motion". It's a long road with lots of ups and downs and a very individual disease so you never quite know what you will or won't be dealing with. Glad to hear you can still travel together!

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


Fri Feb 14, 2014 10:28 am
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Joined: Mon Jan 27, 2014 11:10 pm
Posts: 87
Location: Canada, Ontario
Post Re: Introductions
Hi Dianne; Welcome to the forum, you will find lots of support here and many of your questions will be answered. I'm so sorry you are going through the grieving process again. This is truly a devastating disease for both of you. My husband also knows each time he experiences a further decline in ability, it is such mental torture for him. We have been dealing with this since at lease 2007 and hope to have a dagnosis soon. Anne


Fri Feb 14, 2014 3:40 pm
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