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 Any Lewy Body caregivers in Central Florida?--Returning newb 
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Joined: Sat Aug 21, 2010 12:30 am
Posts: 15
Post Any Lewy Body caregivers in Central Florida?--Returning newb
Many thanks to all of you who regularly participate in this wonderful web site and provide advice and comfort. I have not been been able to participate often, but do check in from time to time and have found most of the information extremely helpful. It's wonderful just to know that we are not alone.
My husband was diagnosed with LBD over a year ago and has a strong case of Capgras Syndrome, as well as the other problems with LBD. The Capgras alone is very difficult for both of us, as you can imagine, and friends could not possibly understand some of the frustrations we have. Even many of our family members are not aware of the symptoms or even know the name of his illness, at this time.
I live northeast of Orlando in Seminole County. I wondered if there are other caregivers in the "general" Central Florida area in the counties surrounding Orlando. Possibly we could form a support group, which might be very small at first. The Alzheimer Resource Center in Orlando has changed its name to include "Dementia" in general, and they do offer some support groups. But it would be comforting to have one for LBD, or at the least, for some of us LBD caregivers to attend the same Alzheimer's Resource support group. Looking forward to hearing back, and I am planning to participate more often here. Thank you!
Estelle H. (Annette28)


Wed Apr 20, 2011 5:41 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Any Lewy Body caregivers in Central Florida?--Returning
Annette, for a time I attended an Alzheimer's support group in AZ and found that there were several whose LOs had LBD. It was an emotional and liberating experience for me the first time I went and I wept quietly throughout the entire session. I felt such profound relief that I finally heard other people telling my own story--the heartaches, the crises, the helplessness. I would strongly urge you to attend, at least until a Lewy group is formed.

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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.


Wed Apr 20, 2011 6:35 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Any Lewy Body caregivers in Central Florida?--Returning
Hi Estelle,
I welcome you back to the forums, I am sure there are others here who might be in your area!

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Irene Selak


Wed Apr 20, 2011 6:49 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Any Lewy Body caregivers in Central Florida?--Returning
Estelle,
I think the nearest SG to you is the one in Winter Haven. You might contact Karen (Karle) Truman in FL to see if she has any ideas. (See dcrinc.org) She's a treasure.
Robin


Wed Apr 20, 2011 8:59 pm
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Joined: Sat Aug 21, 2010 12:30 am
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Post Re: Any Lewy Body caregivers in Central Florida?--Returning
Thank you Irene, Robin, and Mockturtle:

I will follow up on the Winter Haven group and the Orlando ALZ. Resource center, too. Any hints/help will be much appreciated and even more necessary as the disease progresses. I have lumpectomies scheduled for 5/12, followed by radiation (which hopefully will be a newer type--just one five-day schedule). So I hope to make some LBD support group contacts before and after that. These cancers are very early, and the prognosis is excellent. Life brings more than we can handle sometimes. Thank you all for all the time and heartfelt caring that you give through this web site.

Estelle


Thu Apr 21, 2011 2:44 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Any Lewy Body caregivers in Central Florida?--Returning
You will be in my prayers, Estelle, for a successful treatment and full recovery. Sorry I called you Annette before. ;-)

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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.


Thu Apr 21, 2011 2:51 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Any Lewy Body caregivers in Central Florida?--Returning
Estelle,
Best wishes for your surgery. We have three LBD caregivers in our local support group dealing with breast cancer. It's very stressful. All three placed their LBD family members in care facilities while they were dealing with surgery and treatment.
Robin


Thu Apr 21, 2011 2:55 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Any Lewy Body caregivers in Central Florida?--Returning
Estelle - all the best in getting through and recovering from your treatments and surgery. It is hard, and we are all here to support you. 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 Apr 21, 2011 3:00 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Any Lewy Body caregivers in Central Florida?--Returning
Estelle,
I wish you only the best in your procedure and treatment,
I know it often seems like it is more than we can handle.

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Irene Selak


Thu Apr 21, 2011 4:58 pm
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Location: Acton, MA
Post Re: Any Lewy Body caregivers in Central Florida?--Returning
Estelle, You will be in my prayers, hope the surgery and radiation go smoothly. Next month will be 12 years since my mastectomy, I haven't had to shave under my arms for those 12 years. Sometimes there are small blessings.

Take care of yourself.
Fondly, Gerry

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Thu Apr 21, 2011 6:36 pm
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Joined: Sat Aug 21, 2010 12:30 am
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Post Re: Any Lewy Body caregivers in Central Florida?--Returning
Thank you all so much for your encouragement and good wishes--I truly appreciate the kindness. I'm blessed that the cancer was found so early and is small, and I have an excellent surgeon--So I just have to take one day at a time and get through this.

Gerry, I'm glad you are cancer-free for so long.

Take good care...
Estelle


Fri Apr 22, 2011 1:01 am
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: Any Lewy Body caregivers in Central Florida?--Returning
Eatelle, God Bless and wishing you a speedy recovery. You are obviously a very strong person (everyone in this community has to be to deal with this terrible disease), and I'm sure you will win this battle hands down. Stay in touch, you have much support here. Now it is time to care for you! God Bless, Ger xxx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Fri Apr 22, 2011 5:45 am
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Joined: Sat Aug 21, 2010 12:30 am
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Post Re: Any Lewy Body caregivers in Central Florida?--Returning
Thank you all for being so supportive--I'm so glad I found you. Just opening your responses has brightened my last two days.
Warmly,
Estelle


Fri Apr 22, 2011 10:16 pm
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