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 Another new member from FL 
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Joined: Wed Jun 23, 2010 6:20 pm
Posts: 3
Location: Lecanto, FL
Post Another new member from FL
I am a 75 year old male caregiver to my 77 year old wife of 55 years who has been diagnosed with DLB. She was diagnosed with DLB when we went to the Mayo clinic in Jacksonville, FL in October 2008. We spent a week and half at Mayo Jacksonville to find out what may be causing her hallucinations.

(The trip to Mayo was at the suggestion of our second psychiatrist - the first one left the state unbeknown to us after treating her for depression in 2006 with various Benzodiazepines with the last medication being Lorazepam. During this period she started presenting with minor hallucinations which are a known side effect of Benzodiazepines. I was able to get her off the Lorazepam and the hallucinations abated for awhile, but returned with a vengeance.)

My wife's DLB symptoms, especially hallucinations, including delusions have progressed to the point where she has started Aricept and we will try controlling her hallucinations and delusions through drugs.

I have been exploring the internet looking for information from time to time and just recently found the LBDA org site and the forum. I have found the information very helpful and have been reading some of the suggested papers on LBD which have been extremely helpful. I hope through the forum I can get the help I need to cope with being caregiver to my wife as the disease makes it ravages on her life.

Probably not the place to ask, but anybody know about or using Deplin and/or Axona as adjunct to medications?


Mon Jul 05, 2010 8:17 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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Hi there,

Sorry to hear about your wife's diagnosis. Which MD at Mayo Jax did the diagnosing? And do you recommend him/her? There are some terrific MDs for DLB, both at Mayo Jax and Mayo Rochester.

Thank you for reading all of the terrific literature on lbda.org! You can learn a lot that way. Focus especially on Dr. Boeve's "Continuum" paper (from 2004).

I think there may be a thread here on Axona or at least there have been a few mentions of this medical food (that is being prescribed for Alzheimer's). You can do a search of past posts containing the word Axona (or Deplin) here:
http://community.lbda.org/forum/search.php

Best,
Robin


Mon Jul 05, 2010 9:02 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
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Hi - welcome, and sorry you have to be here. It is a wonderful place for support and info. so I hope you'll visit often. There are lots of empathetic forum members who know just what you are going through. Lynn


Mon Jul 05, 2010 10:44 pm
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Joined: Thu Jan 28, 2010 4:42 pm
Posts: 59
Location: Florida
Post 
Hi,
I'm sorry your wife has this dreadful disease, but welcome to the forum. You will find it to be of enormous value in learning about what others have experienced, medication information, and so much more. The support is wonderful too. I take care of my mom full time, also in FL and not far from you. May God bless you with the strength and energy you will need for the road ahead.


Wed Jul 07, 2010 12:06 am
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Joined: Wed Jun 23, 2010 6:20 pm
Posts: 3
Location: Lecanto, FL
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To Robin, LTCVT, and kitkat,

Robin,
Thank you for your concern and quick reply. Can't say that mine is as quick. Kind of hectic last few days with my daughter, son and granddaughter visiting, but nice to have a time of respite.

The Mayo Jax physician was Elliot L. Dimberg, M.D. of the Neurology Clinic. I think his "bed side" manner could have been better, however maybe in his experience he found out it's better to not beat around the bush and lay all the cards on the table with both of us at the same time to break the news about the LBD diagnosis. I would have preferred to have met with him in private so I could ask some pointed questions without my wife being present as I did not want to upset her about my observations.

My overall take at Mayo is all of the testing and consultation to rule out other possible physical problems was outstanding considering my wife's presentation of symptoms.

I did a search on Deplin and Axona mentioned above and am still digesting the results.

Thanks to Lynn and Kitkat for your kind words and encouragement. There is certainly a lot to digest throughout the forum. It probably will be almost a never ending process and hopefully I will be able to take more time to pursue the depth and breadth of the forum topics.

Blessings to all,
Dale


Thu Jul 08, 2010 10:12 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
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Hi Dale - this is what I do when I need to talk with my dad's drs. privately. I write a list of my concerns/questions/issues before the dr. appt. I try to hand this to the nurse and ask her to get the info. to the dr. before he meets with my dad and to tell the dr. I'd like to speak to him privately after he meets with my dad and me together.
If that doesn't work, I take my list with me into the appt. and try to signal the dr. so that my dad doesn't notice and let the dr. know I need to meet with him/her privately. They have always thanked me for doing this because my dad was so good at show time that the dr. had a lot of misinformation about my dad from my dad. I also asked them ahead of time not to bring up the "d word" in front of my dad if they could help it because I thought it would be too upsetting for him.
Since my dad has been increasingly frustrated and angry for the last year I try to do everything I can to get information from the drs. but not get my dad even more cranked up, so lots of discussion goes on without my dad there. He just could not handle it.
All the best to you. I know it's really, really hard. Lynn


Thu Jul 08, 2010 10:44 pm
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Joined: Wed Jun 23, 2010 6:20 pm
Posts: 3
Location: Lecanto, FL
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Hi LTCVT,

Thanks for your insight and suggestions. I'll take them into consideration if the occasion should arise where I need a private conversation with the Doc.

All the best to you also,
Dale


Fri Jul 09, 2010 9:55 pm
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Joined: Tue Jun 22, 2010 4:17 pm
Posts: 18
Location: Connecticut
Post Re: Another new member from FL and one from Ct...
Hi All,

I am a "newish" member, having joined recently...have already posted a couple of times. My husband, David, and I live in Woodbridge, Ct., a suburb of New Haven, to where we retired in 2000, to join our son, a professor at Yale, and his family. My husband was diagnosed with Parkinson's in 2006, I believe, and with LBD somewhat later. We have gone through the gamut of everything you-all have, and we managed quite well with me as the only real caregiver. My husband's condition began deteriorating to the degree that we now have a health aide, a wonderful lady who is a lifesaver to both David and me. I take the "night shift" where I lock us both into our bedroom so David cannot roam the house and get lost, and our aide takes the daytime, where her good humor, ingenuity and willingness to help, are invaluable. We did have a neurologist who made the initial diagnosis, and cared for him for a number of years, but at my daughter-in law's (a nurse practioner) recommendation, we have transferred our care to THE ADLER INSTITUTE, a facility of YALE-NEWHAVEN HOSPITAL,with a geriatric emphasis. The professionals there have been wonderful to work with... ..most helpful and truly interested. My reason for posting this here, I guess, is to offer the information, that before each appointment I fax a short "diary" of what has gone on during the period, and ask any questions I might have, so that the doctor and case manager do not waste their time, and can get right to any issues. They have told me that they like to have the fax . You might like to inquire if your doctors would feel the same way.

I am happy to have found this site, having already gained a number of ideas....Do any of you come from my "neighborhood?"

Best to all,
Marcia


Mon Jul 12, 2010 3:55 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Another new member from FL
Marcia,
Thanks for the info on the Adler Institute. I like your "diary" suggestion. To come across others from CT, you might start your own thread along the lines of "new member from CT" and/or you could do a search of past posts mentioning "CT" or "Connecticut."
Robin


Mon Jul 12, 2010 5:26 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Another new member from FL
Dear Dale of Florida:

I have never posted any information about myself on this site - but I can't avoid doing it now that I've seen your posting. My husband (75) is also Dale. He and I have lived in Ocala, FL for 12 years. He was diagnosed with LBD in August of 09.

I've been active in the LBD Spouses forum where I have found a tremendous amount of support for over a year now. Most of my questions have been answered there. However, Dale has become far more delusional recently so I have been searching for more solutions and decided to come back to this forum (in addition to the spouses one).

My Dale has a long history of sleep walking so initially I was not too surprised with his night time delusions (in February 09) but they became totally disruptive of sleep for either one of us. I got alarms for the doors and blinds for all of the windows. Dale had been going from one neurologist to another complaining of dizziness. They had no answers.

It was as a result of my web searching that we finally found an knowledgeable neurologist here in Ocala and Dale has been doing quite well. We traveled to Italy last winter and to the Canadian Maritimes just last month. However, we have entered a new phase and I'm struggling with his suspicions that I'm involved with his imaginary 'people' and plotting against him. He is a mild mannered man and this is totally out of character for him.

This posting is too long... but I couldn't resist introducing myself to another Dale. (By the way, Dale once hated the name because of Dale Rogers. He was not a girl!!)


I look forward to hearing from you.

_________________
Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sun Oct 24, 2010 1:11 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Another new member from FL
Welcome to the forum! It's nice to have someplace to share ideas, learn new information and sometimes just to vent. Like Marcia, I also fax my husband's physicians prior to an appointment with a brief summary of his status. It is helpful to them and also gives me a reference to what I told them and when. You might also consider the Yahoo groups LBD Caring Spouse forum. It's more like a support group and is just for spouses. Irene, the moderator here can help you get there. God bless!--Pat

_________________
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.


Sun Oct 24, 2010 1:24 pm
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