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 Start of another downswing?? 
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Joined: Wed Mar 23, 2011 11:28 pm
Posts: 13
Post Start of another downswing??
I again would like to thank all who post here, it is such a wealth of info. Over the past few weeks I have been noticing some new symptoms that my MIL is displaying, if it were not for you guys a would have not known about them. The new symptoms include minor drooling, lower jaw jutting out, a more pronounced Parkinsonian shaking in her hands, and rigidity. These symptoms seem to come and go and vary in severity from day to day. Last night me and my DW went to the rehab center to drop off some summertime type shirts for the MIL and found her slumped over on her bed asleep, the shakes were back with her, she was pretty unresponsive to our questions and she would not open her eyes. I went to the nurses station and asked several questions including the results from a urine test for our buddy the UTI and found out that she had requested some pain medication. The nurses said that she had a busy day and may have been very tired and that combined with the pain meds may be responsible for her current state. The nurse did come to her room to check on her and we were able to get her moved up on the bed. That is when I noticed the rigidity in her. We could not get her to totally lay down, her knees were bent with her hands beside her hips and she would not let her head rest on the pillow.
I am afraid that she is taking another downward turn. We will be moving her back to her SNF on Monday because we do not think any more rehab will help her and the rehab staff agreed with us on that. the move will be interesting since her last experience in the SNF was not a good one due to the reaction to Resperidal. Hopefully we can get her settled in this time.


Tue Apr 12, 2011 9:22 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Start of another downswing??
agr,
You mention that you asked about the UTI but I wasn't clear if they were checking again, sadly many medications just react different for each person, so it is really hard to say, this seems rather pronounced to be a down turn due to LBD progression. Just my .02 worth!

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Irene Selak


Tue Apr 12, 2011 9:46 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3126
Location: Vermont
Post Re: Start of another downswing??
Again, it's different for everyone. My dad had significant downturns every few months. He'd be on a steady, slight decline, then lose all sorts of abilities and have new symptoms literally overnight, then go back to the steady, slight decline, and have another significant downturn. We don't KNOW that he had LBD, and he most likely had several neuro. diseases, but LBD was one of the best guesses we had. I wish you a lot of love and patience. 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.


Tue Apr 12, 2011 10:52 am
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Joined: Wed Mar 23, 2011 11:28 pm
Posts: 13
Post Re: Start of another downswing??
The UTI is only suspected at this time, the nurse told me that the order had been written but had not been done yet. My SIL noticed some symptoms that she was curious about and mentioned it at the pateint care meeting that we attended Monday morning and thats when they decided to do a test for it. Even prior to the meeting though some of these symptoms have been showing up. It seems that after every bout with a UTI she slips a little more. God bless all.


Tue Apr 12, 2011 12:01 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Start of another downswing??
Many people with PD and atypical parkinsonism disorders notice that motor symptoms fluctuate during the day. Motor fluctuations can be related to sleep, fatigue, stress, and medication. I do not think that motor fluctuations mark the beginning of a downturn.

Probably she will have some bad days after the move. I hope she can adjust quickly to her new surroundings and routine.


Tue Apr 12, 2011 9:01 pm
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Joined: Wed Mar 23, 2011 11:28 pm
Posts: 13
Post Re: Start of another downswing??
The downswing has progressed to the point that the nursing staff at the SNF has suggested having Mom evaluated by Hospice. She is not eating and the staff can't even get her to drink enough fluids to take her meds. She cannot stand on her own now probably because of not eating hardly anything for the last few days. I tried feeding her dinner last night and could only get 3 little baby bites of potatoes in her and only a few sips of tea. I am afraid that its sunset and the shadow of Lewy is ever growing on her. God Bless all.


Wed Apr 20, 2011 11:30 am
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: Start of another downswing??
I wish you all the best, and if it is time for your dear MIL to pass, may it be a peaceful journey for you all. God Bless, Ger xx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Wed Apr 20, 2011 11:37 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: Start of another downswing??
I do hope that hospice can be a comfort for your Mom and for the family, sorry it has come to this point , I hope for a peaceful journey!

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Irene Selak


Wed Apr 20, 2011 12:07 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Start of another downswing??
My husband has gone through periods like that. And when he was put on Risperdal in 2008 he was like that totally and it's a miracle he came back after it was discontinued. at my request. He has gone through many fluctuations in both physical and cognitive status so I wouldn't assume it's a permanent 'downswing' just yet.

Also, if my husband is getting too little Sinemet he will freeze up like that and be very sluggish and if he gets more Sinemet his behavior becomes combative. It's a fine balance. Not knowing what medications your MIL is on it's hard to say if they have anything to do with her current decline. Time will tell.

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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.


Wed Apr 20, 2011 12:26 pm
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Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: Start of another downswing??
I hear ya. My MIL has started another decline this past week. She has a growth on her foot that should be causing considerable pain, but she says it doesn't. This could be the cause. She has developed mild swallowing issues, but is not running a fever which would indicate possible pneumonia. She gets plenty of liquid and voids fairly clear, so it probably isn't a UTI. Last night she fell again trying to get to the bathroom. Her blood pressure is up, but it still falls when she stands. Her cognition is pretty bad and she has the vacant wild-eyed stare in her eyes. Yesterday she couldn't remember which way to lay down in her bed. I'll take her temp and blood pressure when she wakes up. On a positive note, she still eats like a 250 lb linebacker.

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Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Sat Apr 23, 2011 10:40 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Start of another downswing??
agr -
You might want to have a "conversation" with her or perhaps the SNF's social worker can help. It might be good to know if she's had enough and if people should stop encouraging her to drink and eat. Sometimes this is the final gift we have for our loved ones -- letting them go. Did the hospice evaluation happen last week? I hope they've accepted your mother into their program.
Robin


Sat Apr 23, 2011 1:19 pm
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Joined: Wed Mar 23, 2011 11:28 pm
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Post Re: Start of another downswing??
After a long hard struggle with this horrible desease my Dear MIL passed away on Monday May 2nd at 4:45 PM. She was surrounded by 4 of her 5 children, myself, and my son. At the time of her final breath we all had our hands on her and were telling her it's alright to go home. I will post more in the obit section after she is laid to rest this Friday.


Wed May 04, 2011 8:01 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Start of another downswing??
Please except my condolences on your's and the familers loss of your MIL. her sufferning has come to an end and she is finally free.
I am so very sorry

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Irene Selak


Wed May 04, 2011 8:25 am
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Joined: Mon Feb 21, 2011 9:55 pm
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Post Re: Start of another downswing??
My sincere condolences on your loss. Ar dheis De go bhfuil a anam (may she sit at the right hand of God),
Ger xxx

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cared for Dad who passed away on January 28th 2013 R.I.P.


Wed May 04, 2011 9:10 am
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Start of another downswing??
I am so sorry for our loss, but happy that she has been released from the ravages of this illness. Please take care of yourself and your family members in your and their grief. Nan


Wed May 04, 2011 10:38 am
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