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 Symptoms / communication 
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Joined: Mon Dec 31, 2012 7:34 pm
Posts: 1
Post Symptoms / communication
My mum was diagnosed w LBD June 2011. Rapid decline between May and August 2011 so that she went into hospital in a delirium state and she has not spoken anything meaningful since, became doubly incontinent and stopped mobilising. Mum went into a nursing home last year November.

She has been relatively stable but for contractures in her hands. She has not spoken directly to me but on occasion cries persistently. Mostly she just won't open her eyes. Last visit I asked about the splints for her hands.. The carer put them on but this obviously was v painful. Mum spoke clearly saying "How could you?" repeatedly to the carer.. I have 2 questions:
1. I have been assuming mum doesn't know who I am... We were never able to talk about her moving to the home.. She didn't respond. Now I don't know if she does know dad and I and is just angry. Confused about ability to communicate?

2. Does anyone know of anything (other than big splints) that might help her hands? Her doctor won't discuss with me as I only have financial power of attorney (not health).


Mon Dec 31, 2012 8:59 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Symptoms / communication
First off let me welcome you to the LBDA forums and I hope here you will find some answers and compassion from the many member that walk the very same path you and your family do.

If you only have financial POA then there isn't much you can do except the person who I assume if your Dad can ask the why's, Just because a person with LBD doesn't talk please don't assume the person doesn't know their loved ones as they often do but can express that. As to talking to her about moving to a home she might not have really understood that.

The contractures I have heard are painful and I am sure if this is something the doctor ordered to do he is doing it to relieve some of the pain she has and perhaps some physical therapy might be helpful .

Please try to go to welcome area to introduce your self, you will get many welcomes/

Good luck !

Irene Selak

Tue Jan 01, 2013 10:54 am
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Joined: Tue Apr 24, 2012 5:00 pm
Posts: 78
Location: Fayetteville, NC
Post Re: Symptoms / communication
I'm going to try putting a rolled up washcloth or the like in Ted's one hand that is contracted. I've been trying to stretch it and massage it gently, but it obviously pains him. Don't know if that might help you, but it's something one of our nurses suggested.

Wed Jan 02, 2013 7:13 pm

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 248
Post Re: Symptoms / communication
Hello and welcome - I'm sorry to hear about your mom and her suffering!
While I'm not a clinician, I'm a researcher specializing in geriatrics and chronic diseases, and I did a quick look at the medical literature on hand contractures. There was a pretty thorough review article in 2010 in the Journal of Hand Therapy, volume 22, pp 392-401. The two basic approaches are to apply a higher stress on the joint for a short period and repeat it frequently, or to apply a lower stress but maintain it over a longer period. ("Stress" means they are not lengthening the tissues beyond their elastic limit, but getting close to the limit, then gradually expanding the limit.) The strongest evidence available is for the use of splints, presumably like what they did with your mom. This is especially true once the contractures have happened - they may try other methods when they are at risk of forming, say after an injury or surgery when the hand might be immobilized to allow healing, like being in a cast. So the splint is described as "the modality of choice" for this situation by the hand rehabilitation people.

There was a clinical trial reported in 2001 of botulinum toxin in 7 patients with Parkinson's in which all of them had significant benefit with reduction in pain and accompanying muscle relaxation. I didn't see much of any follow-up from this paper, which appeared in Movement Disorders, 2001, Sept, pp 907-13. There is a fair amount of incidental literature on the use of botulinum to treat contracture or spasticity in circumstances similar to your mother's - for example, after stroke, or in people in a vegetative state to ease care burdens.

It may be worth asking your neurologist whether this would be worth trying. So far as I can tell from a quick look at the medical literature, there's not a lot of direct clinical trial evidence related to this specific setting - a few trials in small numbers of patients. So it's probably an off-label use and might not be covered by insurance. And your neurologist may not feel it's a good idea. But it might be worth asking. A quick injection or set of injections would likely be less stressful to your mom than binding her hands day after day with splints, though the splints do seem to work, over time, if used very consistently for an extended period. (Note that some of the studies used splints after botulinum for maintaining the range of motion.) I am guessing that your main concern here, given your mom's status, is just making her as comfortable as possible, if she is not really using her hands for much.

Good luck!

Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.

Wed Jan 02, 2013 7:27 pm

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 248
Post Re: Symptoms / communication
Just a quick post script: even if you don't have medical power of attorney, you may want to see if you can get HIPAA clearance so you can at least discuss her care. I assume your dad does have medical POA; someone presumably does, given her status - could he sign for you to have HIPAA clearance so that the doctor would be able to talk to you? Assuming you are in the U.S., this is the legal requirement for even having a conversation - the ability to authorize treatment is separate and beyond HIPAA clearance. I have had HIPAA clearance for my parents pretty much since the law was passed, to allow their doctors, many of whom are my colleagues and friends, to work directly with me to help them, as my parents wanted to take full advantage of this resource. But I only got the medical POA a couple of years ago when they were 94.

Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.

Thu Jan 03, 2013 2:05 am
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