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)

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.

Hi Estelle,
I welcome you back to the forums, I am sure there are others here who might be in your area!

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

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

You will be in my prayers, Estelle, for a successful treatment and full recovery. Sorry I called you Annette before.

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

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

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.

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

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

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

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