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 Sitting issue 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Sitting issue
The hardest thing for Dale to understand is that sitting (on the bed, in the wheelchair, or on the toilet) requires turning away from it. He always wants to face the intended sitting place. He even said he wanted to get a wrench and turn the wheelchair back around so he could sit in the chair. The concept of his body position in relationship to lowering his bottom on it is completely gone. Is Dale the only one who does this?

If the problem is familiar, how do you cope with it?

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


Fri Jan 07, 2011 11:16 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Sitting issue
Yes, Derek has done this for some time. I don't know whether it's his
visuo-spatial deficit or his inability to pivot that causes it.

_________________
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 Jan 07, 2011 11:23 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Sitting issue
I think this is called proprioperception -- knowledge of where the body is in space.g It's very common in movement disorders.


Fri Jan 07, 2011 12:13 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sitting issue
When I looked up the definition, I was amused at the thought of this:

Proprioception is tested by American police officers using the field sobriety test, wherein the subject is required to touch his or her nose with eyes closed. People with normal proprioception may make an error of no more than 20 millimeters. People suffering from impaired proprioception (a symptom of moderate to severe alcohol intoxication) fail this test due to difficulty locating their limbs in space relative to their noses.

..So I asked Dale if he could put his finger to his nose. He did pretty well. The first time, he used his knuckle and the second time, he touched the side of his nose. Now, if only I could get him to put his bottom in the chair. :lol:

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


Fri Jan 07, 2011 1:16 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
Post Re: Sitting issue
My dad did the same thing, and I think it started the Day of the Big Decline. Where his body was in space was not a concept that was working anymore. He had to constantly be reminded how to turn, where to put his hands, how to turn and move his feet and legs. And when he had the Lewy Lean, he wasn't even aware sometimes. When he was, the problem was "he was in his car with a flat tire, and needed someone to change the tire." Did you know that beds and recliners had tires that can go flat? LOL It sounds funny now but it was so scary at the time, what he was going through and how he perceived his world. Lynn

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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.


Fri Jan 07, 2011 1:53 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Sitting issue
Frank does the same thing. When I get him dressed in the morning, I try to have everything there so when he sits I can get him done. If I forget anything and just have to go 10', he's up and we start all over.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Fri Jan 07, 2011 2:10 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sitting issue
Yes, Lynn, and there is water on the floor next to the bed. It can be very slippery. :lol: In fact, sometimes it is a pool of water and he refuses to step there.

When Dale finally gets into the position to sit, he almost always says, "Look out!" He thinks sitting is like jumping off a cliff... He also thinks I'm in great danger when he goes down. He is warning me of the potential explosion. It's understandable in some ways because his sitting is quite uncontrolled. I'm sure he feels like he is falling. I'm also quite sure that his back pain is caused by those uncontrolled 'falls.'

I've tried to tell him to 'use your thigh muscles.' That sometimes works. We celebrate when it does.

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


Fri Jan 07, 2011 2:35 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Sitting issue
Leone, did he get his toilet riser yet?

_________________
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 Jan 07, 2011 5:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
Post Re: Sitting issue
Maybe your floor is wet because it's raining or snowing inside your house, like my dad thought was the case with the 50' hallway between his room and the dining room at the ALF! LOL
He was always so afraid he wasn't going to get to a meal, when he could still get to a meal in his wheelchair.

_________________
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.


Fri Jan 07, 2011 5:22 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Sitting issue
Putting the finger on the nose is impossible for Fran. Last time he tried he saluted me.


Fri Jan 07, 2011 5:55 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Sitting issue
Yesterday, when Dale fell, I was in the process of moving him from a kitchen chair to the wheelchair. I had him positioned over the seat of the wheelchair (with the brake on) when he abruptly moved and sat on the floor as he passed out.

He often refuses to sit where I position him. He usually attempts to sit on the arm of the chair. I try to position the wheelchair right behind his knees. That doesn't always help.

Yes, Pat, we did get the toilet riser. At least, he doesn't have so far to go down to sit... but positioning him on it is still complicated. He does want to sit back far enough on it. Getting him to understand that need takes a lot of coaching.

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


Wed Jan 12, 2011 8:37 am
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Joined: Mon Jun 21, 2010 2:24 pm
Posts: 32
Post Re: Sitting issue
My husband also wants to 'nose dive' into everything. Some days are worse than others. He has been on Aricept, Namenda and Zyprexa for 4 months now. Before that there was nothing. In the past 2 months he has gotten to the point that he cannot get up out of a chair or couch, or even get out of bed with out me 'giving him a pull' to get him up. He also cannot turn over in bed by himself. This seemed to come on pretty sudden, withing a few days of beginning.He also has the Lewy lean, shuffling feet, and feet getting stuck to the floor. His cognition is pretty good, though. Knows most things going on around him, has trouble with knowing what day it is , etc. The main problem is that it seems his body is refusing to cooperate with what his brain is telling it to do. I have ask his PCP if increasing any of the drugs would help. He said no, because this was a problem with the 'long nerves' of the body that he thought was maybe due to his diabetes. His Aricept is only 10mg at night and the PCP said absolutely 'no' to increasing it, because my husbands cognition is still so good.So I am at a loss {as most of us are}, to know what to do next. Has anyone else had this happen? He was diagnosed in Sept, probably had LBD for 2-3 years. Thanks for reading this...


Sat Jan 15, 2011 12:01 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3179
Location: WA
Post Re: Sitting issue
Does he take Sinemet or any carbidopa/levodopa medication? My husband would be totally frozen without it. As it is, even with a higher dose, he's pretty immobile now. But in the earlier stages, every increase in dose made a huge difference in his mobility. Does your husband see a neurologist?

_________________
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.


Sat Jan 15, 2011 12:15 pm
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Joined: Mon Jun 21, 2010 2:24 pm
Posts: 32
Post Re: Sitting issue
No he doesnt take anything for his muscle tightness. I think this is a good idea. He has tremors in his arms and sometimes legs. This has been happening about the same time as the not being able to get up. And, no, he wont see the neurologist anymore. It is a hour and a half drive from our home, and it is too tiring on him. He has had 3 back surgeries and a crushed pelvis in the past, so his back is often in pain. I am not sure if it is the lower extremity pain of Lewys or if it is just back pain from the earlier procedures. He also has COPD (Chronic bronchitis) and is diabetic, so we have a lot going on all the time. HIs PCP specializes in Internal Medicine, but I feel that he fails to see the full scope of things. And I realize that he doesnt have the time to do a lot of research either. I will fax him and ask for Sinemet. Cant hurt to ask. My husband is 6'2" and weighs about 220. What mg should I ask for?

Everyone here has been such a help. I still read a lot of the forums, even tho I dont always comment. Thanks for all of your help!!


Sat Jan 15, 2011 1:21 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Sitting issue
Misty, Frank is much like your husband, same meds also. He is not on any PD meds, at this point I'd rather deal with the freezing and tremors than try to find the correct balance with another med. Frank couldn't be healthier, phyically, so I think we have a very long road ahead.
Take care of yourself

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Sat Jan 15, 2011 1:33 pm
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