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 New to the forum - mother with LBD 
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Joined: Sun Sep 14, 2014 4:08 pm
Posts: 2
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Post New to the forum - mother with LBD
Hi, my name is Marian. My mother (76) has been diagnosed with LBD and lives in a nursing home since a few months. The most difficult to handle symptom she has, is frequent anxiety attacks, she hallucinates and hyperventilates because it is so scary. We can sometimes stop the attack by taking her for a walk, but not always. She gets very tired. Afterwards she can not tell us what happened.
Do you have any practical suggestions how to get her out of an attack?
And what can we expect, will the attacks get worse, more often? She has them now approx. two times a day and they last one to two hours.
Any info welcome! Thank you.

Mon Sep 15, 2014 5:57 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
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Post Re: New to the forum - mother with LBD
Welcome, Marian. What types of meds has your mom's dr. prescribed? Perhaps she needs a medication change such as a different med, an additional one, stopping something she's on, etc. This should be done very carefully and slowly, starting with a very low dose and working up to a larger one if the dr. thinks a larger dose is required to help with her symptoms.

You might want to put your post under "Introductions" so that more people will see it, and then when you make future postings, you can see the topic where it best fits. (this "Welcome" area is where the administrators post administrative items typically) This way you are more likely to get more responses since some people seem to zero in on only a few topic areas.

You may want to do a key word search on various topics so you can read what is most important right now, then read as much as you can of all LBD-related literature. There is a lot out there finally, and it is helpful to those just starting this very unfortunately journey. Good luck, let us know how it's going. Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Mon Sep 15, 2014 7:41 am

Joined: Sat May 25, 2013 3:53 pm
Posts: 330
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Post Re: New to the forum - mother with LBD
Welcome to the forum, Marian! As Lynn says, I'd get the docs at the nursing home to review her medication and see if there isn't something that could help. It's very had to watch those anxiety attacks. And, if the nursing home doctor isn't familiar with LBD I'd get him/her to read the information on this web site and get your Mom's case reviewed by a geriatric neurologist who is familiar with LBD. Sending you strength!

Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.

Mon Sep 15, 2014 11:38 am

Joined: Fri Nov 14, 2014 12:39 pm
Posts: 2
Location: Victoria, BC, Canada
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Post Re: New to the forum - mother with LBD
Hi Marian,
My mother has also been having regular "panic attacks" (that's we've been calling them) regularly for years now. They started when she was 60. They have progressed to happening at least once a day, sometimes twice. They sound very much like what your mother goes through. My mom holds her tummy, her heart rate and breathing increase, and she seems scared and in pain. It's terrible to see her this way. The only thing that has helped mom is Ativan and rest. Recently she spent three months in hospital awaiting a bed in a nursing home and they were very liberal with the Ativan... probably too much. She was getting it every day 1-3X per day. This was turning her into a zombie. Sleeping all the time and very depressed. The nursing home she is now in however, only give it to her at night regularly and during the day only if absolutely necessary. That seems to work better for her. I've noticed that stress and fatigue bring the attacks on, so we encourage mom to sleep as much as she want and needs even during the day. And we keep visits short and stress free. Something else which seems to work on the milder attacks is Bach's Rescue Remedy. It's a homeopathic remedy that you can get in many different forms. It's sold in pharmacy's and health food stores here where I live, but you can probably order it online. And one more thing... too much Levadopa (sinemet) was making my mom hallucinate and that in turn made her scared and anxious. Make sure they have her on the lowest dosage possible if she's on it.
Take care,

Wed Nov 26, 2014 5:09 pm
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