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 Continual Walking 
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Joined: Mon Mar 14, 2011 12:20 am
Posts: 3
Post Continual Walking
I have not posted for awhile. My mother was diagnosed with Lewy about 2 and 1/2 years ago. She is living in a SNF. Several months ago she started walking most of the time. Now she is doing it every waking hour of the day (7 AM to 9-10 PM). She walks (at a pretty good speed) from one end of the hall to the other. This is continually. They are now having increased problems getting her to sit down to eat. She walks until she is exhausted and than usually ends up falling or sitting down on the floor (without the chair). She is falling on the average of every other day. So far no significant injuries.

She is only on a cholestrol medication and a thryroid one. The SNF doctor said that medication for the alzheimers would significantly lower her bp and it is low already.

Has anyone experienced this with their lo? What do you do?


Tue Sep 13, 2011 3:28 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Continual Walking
My husband has been on the Exelon patch since early 2007 and it has never affected his BP. I notice that low BP and pulse are only listed as symptoms of overdose.

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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.


Tue Sep 13, 2011 3:49 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: Continual Walking
wow.. hubby walks in circles sometimes around the house, but that awful.. especially the falling!!

hubby had bp problems with galantimine. his low number was waaaaaaaaaay too low.. 50 and under. so they changed his bp med, to benazepril, they hoped it would not be effected when talking galantimine.. however now he is lowering the top number instead of the bottom number.. we have decreased the bp med from 40 mlg to 5mlg and its starting to go down again this week.. seems to stay stable for a month and then off it goes again.. it might be that soon, he will have to come off the bp meds for good!!

mentioning this, hoping another bp med might work, for your mom...

good luck!!
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Tue Sep 13, 2011 4:39 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Continual Walking
Can't the SNF doctor prescribe something for the OCD behavior? I think anti-depressants are commonly used for this.


Tue Sep 13, 2011 6:06 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Continual Walking
And we have heard of cases here where the BP drops with Aricept or Exelon but this is not a very common side effect....and where would we be if we never prescribed a medication due to a possible side effect?


Tue Sep 13, 2011 6:08 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Continual Walking
This punches one of my hot buttons. The SNF doctor sounds like one of those Brad Boeve is dismayed about:

"It pains us greatly to think of the LBD patients who see physicians who have the all-too-frequent view that "this patient has dementia, none of the drugs work so there is little to do, so get your finances in order and plan for a painful next few years when you won't recognize your family, will need to live in a nursing home....." This is the view of so many MDs, including neurologists and psychiatrists, and it is our (LBD specialists) obligation to educate the public and the medical community that LBD is very different than AD, and it is absolutely unacceptable to do nothing or take a nihilistic approach."

The rest of the article, called LBD Requires a Comprehensive Treatment Approach is here: http://www.lbda.org/node/205

Would it be possible to take your mother to a doctor who understands LBD, knows that it is different than AD, and is careful of but not daunted by potential side effects?

By the way, Dr. Boeve is dismayed to find this "nothing can be done" attitude within his own medical community, Mayo Clinics. So the SNF's attitude does not necessarily mean you have your mom in a poor quality place. It does mean that you have to find a specialist elsewhere to get her the help she deserves.

Good luck!

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Tue Sep 13, 2011 8:32 pm
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Joined: Fri Jun 19, 2009 11:23 am
Posts: 201
Post Re: Continual Walking
"It pains us greatly to think of the LBD patients who see physicians who have the all-too-frequent view that "this patient has dementia, none of the drugs work so there is little to do, so get your finances in order and plan for a painful next few years when you won't recognize your family, will need to live in a nursing home....." This is the view of so many MDs, including neurologists and psychiatrists, and it is our (LBD specialists) obligation to educate the public and the medical community that LBD is very different than AD, and it is absolutely unacceptable to do nothing or take a nihilistic approach."

Oh my goodness!!!! These are almost the exact words said to me when my LO became sick and confused. As a former nurse, it always upset me when any person that was confused was labeled with Alzheimers. At that first stage when LO was sick and confused, we were told he had Alzheimers. Little did they know that they pushed my right button. I knew he did not have Alzheimers, so I studied and serched the internet until I found this web site. Another web site I found very helpful was Mayo clinic. I just had to make a comment because, these are almost the exact words used to me. "get your finances in order and find a good nursing home" Yeah right! First job was finding a neurologist that shared my views. With the proper medications, slowly, slowly LO made progress. I am so proud of him. Yes Lewy lives with us, but I make him (Lewy) stay in the corner.
Mary


Wed Sep 14, 2011 7:14 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Continual Walking
You go, Mary, you go! Too bad every patient can't have an advocate like you.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Sep 14, 2011 10:10 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3402
Location: Vermont
Post Re: Continual Walking
And too bad that for so many of our LOs nothing seems to help their symptoms so these drs. have actually done some of us a favor by telling us the reality. I know several people personally who have flown their LOs all over the country (and some to a few other countries) looking for a way to slow down the effects of neuro. diseases. After lots of money spent and false hopes, nothing did help, or didn't help much.
If you find good drs. AND meds that help, you can count yourself very, very lucky IMHO.

_________________
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.


Wed Sep 14, 2011 10:18 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Continual Walking
I count myself very, very lucky. But I would not have been lucky at all if we'd stayed with the first doctor and her nihilistic outlook.

Maybe nothing can be done for Leelee's mother and she is destined to walk a groove in the carpet. But personally I would push very hard to see if we could get lucky with a doctor who knows what to try.

Not all LBD patients respond to treatment. (Not all patients diagnosed with LBD actually have it, for that matter.) But many do. I'd want a doctor who was at least willing to try. And LBD is NOT AD. I wouldn't want a doctor who thinks all dementia is the same.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Wed Sep 14, 2011 10:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Continual Walking
Hallelujah to that Jean. There are way too many drs. who think all dementia is AD, and that just doesn't work for so many people.

_________________
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.


Wed Sep 14, 2011 11:05 pm
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Joined: Mon Mar 14, 2011 12:20 am
Posts: 3
Post Re: Continual Walking
With my post I was really wanting to know if anyone else's LO had experienced the continual walking pattern. She literally does this her entire waking hours. I am sure that pure exhaustion is causing her to fall so often. I have not found any mention of this sympton in other posts or on the Lewy website.

I have had one specialist assure me that she has Lewy and her regular doctor said she does not believe that is her problem.

????????????


Thu Sep 15, 2011 9:17 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Continual Walking
When my husband was briefly in a dementia unit I observed several residents who walked compulsively. In fact, I would estimate about 1/3 of the residents did this. It is difficult to keep their calorie intake high enough to compensate for the activity but, other than being a bit underweight, they were physically healthy. Many were engaged in exit-seeking behavior but I'm not sure that was the reason for the walking. I think it's quite common in AD.

_________________
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 Sep 15, 2011 9:25 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Continual Walking
I have never heard of anyone pacing to this extent. I have heard of people (not with Lewy Body Dementia but with Frontotemporal Dementia or Corticobasal Degeneration) pacing for a couple of hours. As I mentioned above, I think anti-depressants are used to treat this sort of OCD behavior.

The only way to get a confirmed diagnosis is through post-mortem brain autopsy. While someone is alive, you have to focus on treating the symptoms (like this OCD behavior).


Thu Sep 15, 2011 12:32 pm
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