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 Newly diagnosed 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Linda,

Can you contact the LBDA to get the FIRST "Many Faces of LBD" DVD? It features Dr. Barnea. I think that's a great way to learn about his style.

By the way, I mentioned your name in a post to "mermaid." See:
http://community.lbda.org/forum/viewtopic.php?t=2050
You might want to contact her.

Robin


Tue Feb 02, 2010 11:35 am
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Joined: Sat Jan 16, 2010 3:58 pm
Posts: 12
Location: Ft Myers FL
Post 
Dear Robin,
I called and the LBDA is sending me the DVD you suggested. My appointment with Dr Barnea is for Feb11. I was surprised to be able to get in to see him so soon.
Thanks for the suggestion.

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Linda


Tue Feb 02, 2010 11:53 am
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Joined: Sat Jan 16, 2010 3:58 pm
Posts: 12
Location: Ft Myers FL
Post P.S.
Robin, Mermaid contacted me and we have been corresponding. She has been such a great help. THANK YOU SO MUCH for getting me in touch with her. We have so many similar symptoms. It is of GREAT comfort to talk to someone who is going through many of the same things as I am.

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Linda


Tue Feb 02, 2010 11:56 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Linda,
Certainly there is no moss growing beneath you....
Robin


Tue Feb 02, 2010 12:31 pm
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Joined: Sat Jan 16, 2010 3:58 pm
Posts: 12
Location: Ft Myers FL
Post 
Dear Robin,
You bet! :-)
(1) I have to take advantage of whatever lucid times I have.
(2) My husband doesn't seem to "get it". Sometimes it seems like he's trying to push me over the edge.
(3) I am fighting for my life.

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Linda


Tue Feb 02, 2010 1:30 pm
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post re: newly diagnosed - pubpanda
Pubpanda ~ I can only imagine how scary, frustrating and heart breaking this diagnosis must be for you [and your husband]. My husband was 64 when he was diagnosed with Lewy Body Disease - Mild Cognitive Impairment - not yet dementia. You are SO brave to face this disease head-on, and I would say that if anyone can beat it, you will! If only my husband had attacked it, but he basically gave up and expects his pills to work wonders. He does take Exelon and Namenda which have helped. He has also taken Prozac and Buspar for many years. He retired at the age of 62 and although working was a struggle, he declined very rapidly after retiring. So if you can, remain as active as possible. Before he was diagnosed, he also had major surgery and this was very hard on his cognition. So avoid major surgery [anesthesia] if at all possible. I would also suggest you [and your husband] get to support groups immediately as this disease is "crazy-making" - I can't think of another way to put it - one minute things seem okay - then the next minute there is confusion, etc. I also call it the "Drunk" Disease. My husband does not drink but he looks, acts, and feels drunk. Also sometimes people with LBD are thought to be faking their symptoms due to the fluctuating nature of the disease. The rug has been pulled out from beneath you [and your husband]. Long before my husband's dx, our relationship had been damaged, and I mostly blame the disease! It is very hard on relationships. But you are way ahead of most who have been diagnosed because you are still able to write. I wish I had words of comfort for you, but like others have said, do as much as you can that brings you joy. My heart and prayers are with you.
Roxanne


Fri Feb 05, 2010 6:28 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3316
Location: Vermont
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Hi Linda - is there any way you or your dr. can protest the insurance co. decision? Sometimes a doctor (or two's) calls can get them to make a different decision. I really hope you are able to find some help soon. Best of luck during this very trying time. Lynn


Fri Feb 05, 2010 7:02 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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Lynn -
I don't think there's any need for this because Dr. Barnea is definitely an LBD expert. He seems like he has a very good bedside manner.
Robin


Fri Feb 05, 2010 7:11 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post 
Oh, man! It's great that you have found a Lewy friend! Whether we're a Lewy person or a Lewy loved one, we are fighting a lonesome battle unless we can share our experiences with others in the same boat.

I wish you well. You are wise to make the most of your lucid moments.


Fri Feb 05, 2010 7:11 pm
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Joined: Sat Jan 16, 2010 3:58 pm
Posts: 12
Location: Ft Myers FL
Post 
Dear Roxann,
I can't thank you enough for your post!!
I have had a similar experience as your husband! I have also been diagnosed with mild cognitive impairment - not yet dementia - with LBD. I am 62 yrs old. I was diagnosed with Parkonsinism 3 years ago. I had surgery in Jan 2008 and have had symptoms since then. It began with fatigue so severe I couldn't stay awake during the day and really bad memory problems.. In 2009 we went off on a cross-country RV trip and the crazy symptoms began.I had constant severe urgency to urinate causing dehydration. At the same time I had headaches, all kinds of hallucinations, nausea, vomiting, spike in blood pressure, night terrors, confusion, shaking, difficulty walking, weakness, hearing voices and sounds in my head. I thought I was loosing my mind. I ended up in ERs all around the country. FINALLY we got home and my Neurologist suggested Lewy Body disease and I went through a Neuro Phych. testing leading to the diagnoses.

You mentioned that your husband can't write. I can't write legibly but I am forcing myself to keep on typing on my keyboard. I always was a computer person and am trying to stay in the game.

I'm trying to do the exerceses I learned when I was in physical therapy for Parkinsons. Some days, I just can't move. Other days I can do a little. I'm going to keep trying.

Does stress affect your husband? Does he have problems keeping focused on things and get confused just by looking at a bunch of paperwork, have trouble paying bills?

I feel like people think I'm drunk too! My speech gets slurred and I can't walk straight or consentrate on what the converstaion is.

I'm sorry to go on and on but I think your husband's input can help. I can understand what he's going through.

Please keep writing,

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Linda


Sat Feb 06, 2010 4:47 pm
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Joined: Sat Jan 16, 2010 3:58 pm
Posts: 12
Location: Ft Myers FL
Post 
Thanks for your concern, Lynn.
Robin - I am so glad you recommended Dr Barnea and feel like there is hope. I can't thank you enough.
Mockturtle - I am trully glad to have found someone else with LBD. Thanks for your post.

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Linda


Sat Feb 06, 2010 4:51 pm
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Joined: Sat Jan 16, 2010 3:58 pm
Posts: 12
Location: Ft Myers FL
Post P.S. Medications
Roxanne,
I ment to mention, I have been taking prozac, busbar as well as wellbutrin and alprozalam (for anxiety). These are along with my Sinemet med for the Parkinsons. A while ago, my Neurologist added Aricept. Then my Psychiatrist took me off Aricept and put me on Abilify. My next visit to my Neurologist, he insisted on my going off Abilify and back on Aricept. He said he would call my Psychiatrist and talk to him and as long as they agree, I should do this. He said if I didn't hear back from him, go ahead with the plan. So I did....On Friday I went to my psychiatrist who said my Neurologist never talked to him and he feels I should not be on aricept but on abilify. (Apparently from what I've heard, you should not be on both.)
Thank goodness I'm going to Dr Barnea!

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Linda


Sat Feb 06, 2010 6:04 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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My guess is that Dr. Barnea will want you to take Aricept, a dementia medication. No guess what he'll do with Abilify, an antipsychotic.

I think Dr. Barnea is Board-certified in BOTH neurology and psychiatry.


Sat Feb 06, 2010 6:40 pm
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
Post 
my Mother is on both aricept and abilify- see what you find out from the new doc.
good luck
Sharon

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syt


Sun Feb 07, 2010 9:31 am
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Joined: Thu Jan 14, 2010 2:40 pm
Posts: 95
Location: California
Post re: newly diagnosed - pubpanda
Dear Linda "Pubpanda"
Just found this post from you - darn computers... Please feel free to email me directly. Anyway, I was amazed at how similar your symptoms were to my husband's (the ones you mentioned in your introduction). His psychiatrist had never heard of Lewy Body Disease which was a little discouraging... We live in the mountains of Southern California and it is difficult to get to real help. Oh, I'm glad you mentioned the RV trip! The last one we took was a nightmare with him all over the road and blaming it on the RV. Nearly scarred the daylights out of our two mastiffs and me. This was back in 2003. In 2004, my husband saw a neurologist who did a mini mental exam. Said my husband was okay but to come back in 6 months if he had any more concerns. He was not okay which really troubles me that a neurologist would be so blind. In 2005 we took another trip with a new RV [I call it Lucy's long long trailer] and it was another nightmare. I swore I would never get in the car with him again but of course I am a slow learner. Then he started having stomach pains in August 2005 [had already been hospitalized with a bleeding ulcer in 1988 and apendectomy abt. 1970]. So he went through testing and it was determined his gall bladder was problematic. Surgeon was going to do the laparascopic type but when he got in there the gall bladder was necrotic so it turned in to major surgery. Recovery was very very slow with hallucinations prob. due to the morphine he was given for pain. Sorry this is so rambling... way too much to say. No he cannot write and his printing is very small and shakey. What I meant when I said you can write is you are emailing... Sorry for the misunderstanding. His work required he learn to use a computer and it just about threw him into a nervous breakdown along with the job [teaching]. Yes, stress does put him over the edge even though he has used the anti-anxiety Buspar and Prozac for 20 years. Hope I am not repeating myself but he also uses Exelon and Namenda which have helped. His psychiatrist tried Effexor for depression at the beginning of 2006 which made matters worse so he went back to the Prozac. He has also used Klonipin [tranquilizer] for his night terrors but apparently it can cause confusion so he stopped it. My heart goes out to you Linda. The more I read about this disease the more hope I have for everyone involved IF the proper help is obtained. It sounds like you are headed in the right direction and also that you still have a great amount of talent. With Prayers & Hugs to you!
Roxanne


Last edited by FiatLux on Sun Feb 07, 2010 7:49 pm, edited 1 time in total.



Sun Feb 07, 2010 4:17 pm
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