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Joined: Sun Nov 11, 2012 11:30 am
Posts: 5
Post Re: new member
thank you so much, yes im so confused as to what to do for the best i just didnt know what to do as the delusions are so so real to my mum, i did wonder that if i said to her that what she was talking about was not real that would confuse her more so ill go along with them as suggested, very new to this im just glad i found this forum thank you


Tue Nov 13, 2012 7:12 pm
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Joined: Sun Nov 11, 2012 11:30 am
Posts: 5
Post Re: new member
thank you so much pat


Tue Nov 13, 2012 7:23 pm
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Joined: Sun Nov 11, 2012 11:30 am
Posts: 5
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hi all today we went for the results of my mums brain scan which as we knew she was diagnosed with lbd we also learnt that in time she will not recognise who we are and that she will look at her children as a friend and my dad as an old man ( more like hes her dad) the phychiatrist said its becauce she will believe she is young, he said she will feel emotion and that will know for instance the touchhug of her familly, im heartbroken i didnt know she would eventually not know who we were, is this true will this happen and what happens can anyone tell me :cry:


Thu Nov 15, 2012 7:42 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: new member
Tania, my husband sometimes knows who I am. That is, he knows I'm his wife, although he doesn't usually know my name any more. Believe me, so many deficits come and go in this disease that no one can make a prediction like that!

_________________
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 Nov 15, 2012 7:56 pm
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Joined: Sun Nov 11, 2012 11:30 am
Posts: 5
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thank you pat im just so confused atm the worst thing is these delusions about her baby and shes lost him just yesterday she was crying said she had been to the clinic and now cant find her baby, today there has been gangsters upstairs and there are boys sleeping at her house and they have a key, today the phychiatrist said that if ever mum was addmited to hospital for any reason they must be made aware she must not be given anto phychotic drugs under any circumstances he said they are very bad and could even kill her im in the uk i dont know if its different in other countrys but we were told this today, we try when she is getting so distressed over her baby to quickly go on to something else and she will listen but 2 mins later she starts about the baby or children again, my dad has been woken several times at 3 and 4 in the morning by my mum in sheer panic wanting him to go out in the car and find the children as they should be home


Thu Nov 15, 2012 8:09 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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While it is true that most antipsychotics are very risky in LBD, many, including my husband, have done well on quetiapine [Seroquel]. Any such drug needs to be started with a very low dose. There is so much variation in responses so no one drug is good for all. My husband's neurologist consideres Seroquel the safest of the antipsychotics for use in LBD & PDD.

Perhaps you could print off the one page LBDA fact sheet and take it in to her physician for discussion of options.

_________________
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 Nov 15, 2012 9:00 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 343
Post Re: new member
Tania, I have a chapter on medications with LBD in my book. There is a "beware list" of medicines to be very careful with (and avoid in many cases) with LBD. Most of those were provided by Dr. Dan Kaufer, who serves on the LBDA Scientific Advisory Council and is an LBD specialist at UNC Chapel Hill.
I included this chapter mainly because it was hard to find in one place, and hypersensitivity to certain meds is a hallmark of LBD. I drew the list from various sources, one of which was the LBDA website. It was approved by Dr. Kaufer before I put it in the book since I am not a medical person.

Here is the link if you are interested for future reference:
http://www.amazon.com/Treasures-Darknes ... roduct_top

Pat is right about everyone being different and some meds working beautifully for one patient and disastrously for another. LBD is variable from person to person. But almost all LBD patients likely benefit from the "low and slow" approach to meds.

I hope this will help you.
Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Thu Nov 15, 2012 10:33 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: new member
I think the caution from the doctor about no antipsychotics is prudent, though. A couple of years before my mother was diagnosed, she had minor surgery and had a terrible reaction to something, probably anesthesia. So her surgeon ordered Haldol (an antipsychotic) basically as a chemical restraint because she was trying to pull out her IV and climb over the bedrail. Yikes! It really put her over the edge. The point is, I think doctors without any expertise with dementias pretty routinely use drugs like Haldol, and if the LO is in the hospital with some other issue, it is no time to start fooling around with antipsychotics.

Tania, BTW, I am afraid it is pretty common for our LOs not to know who we are at some point. My mother doesn't know who my husband and I are, but she still recognizes us as people who come to visit, so it's not all bad. Sometimes she thinks I am her mother and sometimes she thinks we are just friends. The good thing is, while it is sad for us, it really does not upset her, and for that I am grateful.

Julianne


Fri Nov 16, 2012 2:27 pm
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Joined: Fri Nov 16, 2012 12:46 pm
Posts: 1
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Hi All. My name is Cathy and my husband was recently diagnosed with LBD. Don is 66 and I am 51. I have suspected for over a year that this would be his diagnosis. He started 4 and 1/2 years ago with cognitive issues and changes in his behavior. He would not (still doesn't) leave my side, he sometimes seems paranoid as well. He was initially diagnosed with Parkinsonisms, no tremors just shuffling, no arm swing when walking, and rigidity. The stone faced symptom was upsetting to our children (17 and 21) as they always thought something was wrong. As his cognitive performance has declined and mild hallucinations began I had researched enough to know where we were going. I don't mind telling you guys as you have been this way before I, this scares the heck out of me not to mention our children.

He is now on Exelon patches and I think it has "sped" him up some. However he still has trouble with conversations, appropriate responses, but his cognitive performance has not improved at all. The hallucinations are mild at this point and seem to be entertaining to him.

I look forward to comparing notes and sharing stories in the "days" ahead. After reading some of your posts I am glad we have this forum.


Fri Nov 16, 2012 7:02 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
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Glad you found us, Cathy! Welcome!

_________________
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.


Fri Nov 16, 2012 7:14 pm
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Joined: Fri Apr 06, 2012 10:19 pm
Posts: 27
Post Re: new member
Hi Biminicat, I'm quite new to these forums as well but I have found the information here so useful and reassuring when nobody around us seems to know anything about this illness. Everybody here has been so welcoming. I wish that more people knew about it. There must be so many people out there facing this on their own. I hope that you get help and answers and look forward to talking to you in the future.


Sat Nov 17, 2012 4:23 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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I would like to welcome Tania and Cathy to the LBDA forums, I am glad you both found us and I hope this can be a place for information and comfort to you both!

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Irene Selak


Sun Nov 25, 2012 4:39 pm
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