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 Newly diagnosed 
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Joined: Sat Jan 16, 2010 3:58 pm
Posts: 12
Location: Ft Myers FL
Post Newly diagnosed
Hi,
I am a 62 yr old woman diagnosed with LBD.

I know this is a terrible question to ask you but can anyone
tell me how this disease progresses. How much time after diagnosis
is there? Approximately? Please?

It started with me 3 yrs ago with intense anxiety and parkonsinism.
Over last summer the hallucinations began( sight, smell & hearing) night terrors, bladder inconsistency,blood pressure inconsistency, headache,etc. etc.

I need to know how long I have before I don't know what's happening anymore. Will this progress fast? slow?

Some days I am really good. What should my husband do if I get
senile?

I just don't know how long I have and noone seems to understand how
important this is to me.My dr says "take one day at a time" but if I'm
dying there are things I want to do before I go, and I need to do them
now before I can't do them anymore. Do you understand what I'm saying?

I know every case is different but there must be some kind of
pattern the disease follows. :?:

Thanks for listening.

_________________
Linda


Sat Jan 16, 2010 5:18 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Linda,

Sorry to know of your diagnosis. I'm glad you've joined us here. Can you get your husband to join us here as well? I hope he's supportive of you and is anxious to learn as much as you are. Many of us -- patients and caregivers -- go through a denial phase. It's a challenging diagnosis.

You need to immediately write down, if you haven't already, your end-of-life treatment objectives and assign someone to be your healthcare proxy, when you are no longer able to make or communicate your decisions. I encourage you to have a meeting of family and close friends to review your decisions/plans so that everyone is clear on what you want. This will be a hard meeting but much better to have it now, than wait.

Info on progression and prognosis is hard to come by because this is a little-studied disease. The diagnostic accuracy is less than 33% so few people diagnosed with LBD actually have LBD upon brain autopsy! (I hope you have discussed brain donation with your husband.)

Based on a study of 14 path-confirmed LBDers, Dr. Litvan and colleagues found that average survival time was 10 months after the onset of dysphagia (swallowing problems). (The range was 3-17 months.)

Based on a 2007 Austrian study of 243 path-confirmed LBDers, median survival was 5 years after symptom onset. "Older age at onset, fluctuating cognition, and hallucinations at onset predicted shorter survival..."

As you can see, most of us here are caregivers. How can you find others diagnosed with LBD? First, you might post to the "Support group for those with early LBD" section of this Forum. It doesn't seem very active but it's worth a try. Second, contact you local chapter of the Alzheimer's Association to learn if there's an early-onset dementia group you can join. Third, check out the blog of David Thomas, a psychiatrist (now retired) who has been diagnosed with LBD and/or FTD. See: http://knittingdoc.wordpress.com/ Fourth, contact Karen (Karle) Truman, who runs many dementia caregiver support groups in the St. Pete area. She is well-placed to know what resources might be available to you.

Further, I suggest you see an LBD expert to run the diagnosis by that person. Make an appt with either Dr. Tanis Ferman (neuropsychologist) or Dr. Jay Van Gerpen (neurologist) at Mayo Jax. I don't know the right number to call to make an appt with either but the Mayo Jax Memory Disorder Clinic phone # is 904.953.7103. You can see both MDs on LBDAtv at:
http://www.youtube.com/user/LBDAtv Another top-notch LBD MD at the Coral Springs Medical Center is Dr. Benjamin Barnea (neurologist and psychiatrist).

Finally, read Dr. Boeve's 2004 Continuum paper, posted on lbda.org, and tell your MDs that this is the treatment regimen you want followed.

Good luck,
Robin


Sat Jan 16, 2010 7:15 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Karen (Karle) Truman recommends a Ft. Myers resource to you:

"Dottie St. Amand is the Executive Director and has a world of resources available in the Ft. Myers area. Please contact them for information and referrals.
The Alvin A. Dubin Alzheimer's Resource Center, Inc.
10051 McGregor Boulevard
Suite 101
Ft. Myers, FL 33919
Phone: 239-437-3007
DUBINCTR@aol.com"


Sat Jan 16, 2010 8:40 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Linda ,
Welcome to the forums, I am sorry for your DX , I understand your need for information and Robin has given excellent advice, there are so many factors with how long the duration of this illness is, age overall health,falls , infections there really is no way to predict really.Live each day to the fullest and enjoys the things you do the best you can.

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Irene Selak


Sat Jan 16, 2010 10:58 pm
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Joined: Sat Sep 22, 2007 5:53 pm
Posts: 90
Location: Texas
Post 
Linda, I agree that Robin has given you excellent suggestions. One thing that I asked myself recently was, were we so busy just trying to get by that we did not do some of the things my husband might have liked to do. I worked until Dec. 2006 and I think I was just busy living that I did not take advantage of some of his good years. If you can afford to, do some of the fun things that you have put off doing.
Lorraine


Sun Jan 17, 2010 12:42 pm
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Joined: Fri Jan 15, 2010 1:40 am
Posts: 3
Post Linda
I also am very sorry to hear your story, I can feel your urgency.. My dad was like that at first. My dad had the same symptoms you are talking of after about 3 years, and he is atleast in his 7th year. His cognition is slow and interrupted, but he still has his little sense of humor, and i can understand his broken sentences sometimes. He has trouble with swallowing liquod so he just drinks nectar thick drinks. It seems that something drastic would happen to him, not saying this will happen to all, of course, but he had a heart attack, which a long story began, but that is how he declines a little... He does not decline as fast as the Alzheimer patients with him... He is 85, so don't sell your self out yet, please try and be as easy as you can with yourself as Stress may make it worse on you... Do you have children? Maybe write down what you think you would like to get done and maybe they can help you ... Also, i heard something i think is a good idea, and that is to wear a wrist band around your arm or ankle saying you have LBD, and any medications should not have, as they gave my Dad medications that he was allergic to and was in dellerium for a month. Hope to hear from you again.


Sun Jan 17, 2010 12:48 pm
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Joined: Sat Jan 16, 2010 3:58 pm
Posts: 12
Location: Ft Myers FL
Post Thanks
:) Thank you all for your fast and comforting responses. I don't feel as alone anymore. It's great to have a place to go to when I need accurate information and especially when I need support. Thanks again.

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Linda


Sun Jan 17, 2010 5:16 pm
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Joined: Tue Apr 24, 2007 1:09 pm
Posts: 43
Location: Alberta, Canada
Post 
Hi Linda,

I'm sorry to hear about your diagnosis, but it's great that you're trying to be proactive! The one thing that my mother's doctor told us when she was finally diagnosed was that if she had wanted to do anymore travelling, to get it done within the next year (or two). I am SO glad we took this advice! We were able to take a trip to Maui and an Alaska cruise together while she could still enjoy it (and I was able to provide care). There's no way that she could do it now, and I wouldn't be up to the challenge of providing the level of care that she requires now.

And, be sure to have all of your ducks in a row re: legal issues, living wills, etc. Make sure that your loved ones know what you want. And spend as much quality time as you can with everyone that you love!!

Take care,
Suz


Sun Jan 17, 2010 5:29 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post 
Linda, almost everyone here is a caregiver so we know what that's like, I think we can all benefit from your posts. It might give us a little more insight as to how our loved ones feel, their worries, concerns and fears. Sorry you have to join us, but there is a wealth of info here.

I agree with Suzee, get all that business stuff out of the way, and do some of the things that you've been putting off, none of us know about tomorrow.

Take Care of yourself,
Gerry


Sun Jan 17, 2010 10:05 pm
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Joined: Sat Jan 16, 2010 3:58 pm
Posts: 12
Location: Ft Myers FL
Post Thanks
Thank you Susee for the great advice. We took my Mom & Dad on a cruise a year before Dad passed away. It was something he had wanted to do all his life but hadn't since Mom was fearfull of the water. Mom agreed to go and it was not what she thought it was going to be. I don't think there was anyone on the ship who had a better times then she did. It was a wonderful experience for everyone.

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Linda


Mon Jan 18, 2010 4:14 pm
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Joined: Sat Jan 16, 2010 3:58 pm
Posts: 12
Location: Ft Myers FL
Post thank you
Thanks Gerry for your post.
I am starting to feel hopeful! I'll be happy to give you insight on how things go and am happy that I can be of value to you & the other caregivers on the board. This will also give me a chance to express my feelings and emotions as I go through the stages of this disease. :-)

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Linda


Mon Jan 18, 2010 4:19 pm
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Joined: Sat Jan 16, 2010 3:58 pm
Posts: 12
Location: Ft Myers FL
Post 
Hi,
I called the Mayo Clinic in Jacksonville and told them I wanted to make an appt with Dr Tanis Ferman or Dr Jay VarGerpin re: Parkinsonism, Lewy Body disease. The scheduler put my name and symptoms on their computer and told me that I should see Dr. Tanner. I''m not sure what type of dr he is. Does anyone know anything about him? SHould I change the appointment and insist I see one of the other 2 doctors you recomended instead ? :?: What to do?

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Linda


Sat Jan 23, 2010 3:50 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Linda,
I gave you both names because I think very highly of both MDs for treating LBD. (So, you should not be disappointed that you are seeing Dr. Ferman.) Tanis Ferman is a woman. She has a PhD is psychology. She is a clinical neuropsychologist. She's on the LBDA's Scientific Advisory Council. She is the lead author of the Mayo Fluctuations Questionnaire, which is very helpful in diagnosing LBD. You can watch her on the LBDA's youtube channel. (Link posted above.) You can also do a search on "Tanis Ferman" on lbda.org to find links to various articles she has written.
Robin


Sat Jan 23, 2010 5:41 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3309
Location: Vermont
Post 
Linda - I'm glad you're getting info. that may be of immense help to you. I'm glad I went on a trip to Europe with my dad a few years ago. If I were diagnosed with something like this, I think I'd make a list of the things I've always wanted to do, and get going on it! I hope you find health care professionals who can help you and that you like.
I have felt like no one understood what it was like to suddenly take charge of my dad's life, especially with his illness that has yet to receive a firm diagnosis. Don't know if that will ever happen, but at least now after all the reading I've done here, research I am doing at the local med school and hospital, as well as talking with people at support groups and the local Memory Center, I am feeling more connected to other people who are going through similar things and are supportive and understanding.
There are some wonderful people on this forum and on the chat, so just ask for help - there are plenty here to give you moral support and info. that you may need. Have a good weekend. Lynn


Sat Jan 23, 2010 8:20 pm
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Joined: Sat Jan 16, 2010 3:58 pm
Posts: 12
Location: Ft Myers FL
Post Me again
I had made an appointment to go to the Mayo clinic but my insurance does not cover it so I had to cancel. My insurance will cover Dr Barnea in Coral Springs though so I made an appointment there. Robin, you had mentioned him as being excellent for LBD. Hopefully he can give me more information about my condition and tell me which direction to head. Could you tell me any more about him? Any suggestions regarding information and/or questions to ask him would be helpful. This is my last hope.
Thanks

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Linda


Tue Feb 02, 2010 11:27 am
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