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 New from ME, Mother was Dx with Parkinsons? 
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Joined: Tue Oct 12, 2010 6:25 pm
Posts: 10
Post New from ME, Mother was Dx with Parkinsons?
My mom began showing some symptons in Jan 2009.(focusing, her writing very shakey and small, dead stops, difficulty getting in and out of bed and chairs along with walking. By Aug. 2009 she was found by her neighbor in the am hours after exhibiting some hullicanations and was taken to the ER they diagnosed her with a UTI infection. Throughout the night she got worse and I took her to a different ER and they ran several test. and was told she was dehadrated and the antibiotics should begin to work and we went home and she could not be left alone was very unsteady had fallen a couple of times.. So I stayed with her for a couple of days. She seemed to be getting better by Monday and went to her primary doctor and she recommended an MRI. Well I will make a long story a little shorter. Let me just say she got worse and ended back in the ER and the Doctor there admitted her to the rehabilitation floor, she was there for 30days having lots of OT,PT and Phyc. eval. Then they discharged her to a rehabilitation home for another 30days she slowly seemed to be getting better, but by the time for discharge due to ins. cov. it was determined by the Goulds assesment she could not live alone, she needed to be in an assistant living facility.(Dec.2009) Throughout this whole time no real diagnosis. Finally in Feb 2010 she was seen by a Neurologist and was given the diagnosis "Parkinsons" after researching on my own I accepted this Dx..She was prescribed Synamet, along with her thyroid, Htn and one other med to help her with her sleeping (can't remember the name). She was doing "ok" for a while. But lately she has been very confused about the time and discouraged about having to go to the bathroom all the time and at times not making it to the lavatory in time..her voice is very hoarse and quiet and seems lost to me.. After I saw a women on the morning show promoting LBDA it sparked my memory about hearing about LBD back in my college studies..and after reading up on it I feel My mom has a lot of these symptons. Oh by the way my mom just turn 70 this year and this is very hard for here to be dependant on others and not be able to live on her own anymore. I am going to mention LBD to her neurologist at her next appt. in Nov. Sorry for the length of this post.. Just wondering what others think. Thank You Gayle

Fri Oct 15, 2010 11:04 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: New from ME, Mother was Dx with Parkinsons?
Welcome, Gayle. My husband was also initially diagnosed with Parkinson's Disease which, you may know, is also a Lewy Body Disease. Both diseases are caused by the presence of Lewy bodies in the brain. In Lewy Body dementia, the Lewy bodies are more diffuse throughout the brain than in PD, as I understand it. Since your mother developed the Parkinson's symptoms around the same time as the dementia it seems very likely that she has LBD. I'm not sure why neurologists are reluctant to give a LBD diagnosis early on--it would save a lot of confusion and possible avoid some medication problems.

It's wonderful that the spot on TV--brief though it was!--caught your attention. :-)

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 Oct 15, 2010 11:50 am

Joined: Tue Oct 12, 2010 6:25 pm
Posts: 10
Post Re: New from ME, Mother was Dx with Parkinsons?
Thanks for your quick reply... I just posted a question about Medications. but maybe you can answer. She takes sinamet,thyroid,htn,and anti-phyc med now.. is there different meds for PLBD I should be mentioning to her neurologist at her next appt. in Nov. ?

Thanks again I'm learning so much from these forums! If only I had heard about this last year :(

Fri Oct 15, 2010 12:02 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: New from ME, Mother was Dx with Parkinsons?

I've never heard of the "Gould's assesment" but that sounds like it would be a very useful tool for clinicians and families.

Amazing that you even heard about LBD during your college studies. Are you a recent grad?

Have you checked the LBD diagnostic criteria on Does your mother fit the criteria for possible or probable LBD? Note that PDD (Parkinson's Disease Dementia) is one type of LBD, so an MD's diagnosis of PD is certainly appropriate.


PS. I'll respond to the medication question in that area of the Forum.

Fri Oct 15, 2010 1:22 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: New from ME, Mother was Dx with Parkinsons?
Welcome Gayle, sorry for your need to find us but I am glad that you picked up on the short TV coverage. Many of our Loved ones were first DX'ed with Parkinsons, so that is fairly common. Do check out the

Irene Selak

Fri Oct 15, 2010 3:58 pm
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Joined: Tue Oct 12, 2010 6:25 pm
Posts: 10
Post Re: New from ME, Mother was Dx with Parkinsons?
Thanks for all your help.. I will continue to do my reading/research. I will get back with any updates after my moms upcoming Dr's appt.

Thanks again, Gayle

Sat Oct 16, 2010 7:43 am
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