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Joined: Fri Jan 02, 2009 12:29 am
Posts: 11
Post Newcomer
My mother is 77 has PD with possible LBD. I believe Possibly just LBD. She seems to have taken a turn for the worse. I am looking for support and answers. She has every symptom of LBD and has for 6 years. They diagnosed her with PD 5 or so years ago and Possible LBD 3 years ago. She has been having delusions and hallucinations sleep disorder for 7 plus years. What is different now is hardly any good days . She is fair with memory however the rest is going appetite, cognitive, energy, sleep disorder, hallucinations delusions etc. I am trying to understand what is happening and what stage she is in. She lives in assisted living and hardly leaves her apt. anymore. Tires so easily.
This happened like overnight. She had an infection about 7 months ago and was hospitalized. It has been a decline ever since.

Help!!!

Thanks
Peggy P


Fri Jan 02, 2009 9:00 pm
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Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
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Hi Peggy, you have come to the right place for support and for answers. I am fairly new to this site and also to LBD and you will be given a lot of support here, they all seem to understand what each of us is going through and it seems to me that there is always someone that has been through whatever period of this awful disease you are going through at the moment.


Fri Jan 02, 2009 9:42 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Peggy, sorry you had to join us under the circumstances. One of the unnerving aspects of LBD is that you can't really "stage" it as one can with Alzheimer's. Is it possible that your mom has been on any new medications since she was in the hospital -- could that be triggering the worsening of symptoms? Also, certain PD medications can exacerbate the LBD symptoms (another pain the butt with this disease). Lastly, is your mom on any anti-depressants? If not, depression, which is quite common among dementia patients, can be causing some of her symptoms (tired, listless, etc.). Talk to her neurologist or psychiatrist to see whether adding or upping her antidepressants might be considered. And keep us posted on how you and your mom are doing.

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Renata (and Jerome-in-Heaven)


Fri Jan 02, 2009 10:47 pm
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Joined: Fri Jan 02, 2009 12:29 am
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Post Mom meds Diagnosis
Thank you for your posts.. Moms neurologist still is unconvinced she has LBD. It is just a possibility.. When she goes to see him she is usually having a good day. However she has not seen him since this latest down turn. She takes leva dopa, requip , darvocet as needed ,aricept and valium to sleep. She does not take an antidepresssant. She has been on these meds for years. They are treating Parkinsons. Mom says she can tell something is wrong. She is frightened. I am stepping up my caregiving. She needs help with most things, simple tasks are very difficult for her.
I think we need too find a new Doctor here in Phoenix.. Any suggestions?

Thanks,
PeggyP


Sat Jan 03, 2009 12:33 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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PeggyP,

Sorry to hear about your mom. Unfortunately infections can cause a sharp decline.

Based on the meds your mother is taking, it doesn't seem like she's been treated properly. Please read the Boeve "Continuum" paper available on the LBDA website. Speak with her MD about treating hallucinations/delusions with perhaps Namenda or an antipsychotic, treating the fatigue with perhaps Provigil, and treating the RBD with perhaps Klonopin or melatonin. And she's on some very sedating meds -- Darvocet and Valium.

I hope you can find an LBD-savvy MD as that's so important.

Renata (raffcons) lives in Palm Springs. She and Jerome don't have anything good to say about Mayo Scottsdale.

If you do a search of the word "Phoenix," you will find some discussion on MDs in Phoenix. Irene Selak offered this name, pointing out that she knows nothing about them:

Lutheran Memory Disorders Institute
500 West Tenth Place, Suite 41, Mesa Arizona 85201
480-461-2175

You can ask if they have an expert there on Lewy Body Dementia.

Good luck,
Robin


Sat Jan 03, 2009 12:58 pm
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Joined: Fri Jan 02, 2009 12:29 am
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Post Thanks
Thanks Robin..

I intend to find a new MD. The one she has does not seem to think she is that bad. I guess you cannot expect much from them since they see your loved one one hour every couple of months. It is frustrating but this forum has helped me to understand that we who care for our LO are the ones that see it all.

PeggyP


Sat Jan 03, 2009 2:16 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Peggy --
Robin is right about my opinion of ongoing neurological care at Mayo Scottsdale, but they did the diagnosis there and we finally got a correct one. SO you might want to go to the Mayo to see a neurologist just to get a solid diagnosis. Has your mom had any neuropsych testing? That usually takes several hours and the end results give a very clear picture of the specific areas of cognitive impairment -- often an excellent indicator of the likely diagnosis. They would do that at the Mayo as part of the neurological exam.

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Renata (and Jerome-in-Heaven)


Sat Jan 03, 2009 4:10 pm
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Joined: Fri Jan 02, 2009 12:29 am
Posts: 11
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Hi Renata and Jerome,

Thank you for the info on Mayo. My Mom's current Neurologist has not recognized her LBD. He did give her the neuropsych testing 3+ years ago and at that time they said possible LBD. I will take her to Mayo. I think she has had it all along, especially now that I have been reading this
LBD forum. My Mom is extremely lethargic and sleeps all the time. Do you know why this happens?

Best to You Both,

Peggy P


Sat Jan 03, 2009 7:21 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Welcome PeggyP. Sorry we have to meet under these circumstances but you have certainly come to the right place for support. The weight of caring for a LO 24/7 can become indescribable at times. I was at my wits end one day and finally joined in. I cannot tell you how invaluable the information and support are. Obtaining the correct diagnosis and finding the right combination of medications is crucial to managing this terrible disease. My best to you and your Mom.

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Dianne C.


Sun Jan 04, 2009 12:51 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Fatigue is part of PD and PD-related disorders. It can be treated with psychostimulants such as Provigil (modafinil).


Sun Jan 04, 2009 6:30 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Peggy,
Welcome to the forums, As pointed out to you infections can be hard on the dementia patient, as to the doctor often they treat only what they see at the moment, if you are not happy with the doctor then a change is in need. I can get you a list of Doctor that we have spoken to in the state of AZ and perhaps you could settle on one of them. Sorry for the delay in my reply but I haven't been able to get into the forum myself, I had to be reset for the forums.


Sun Jan 04, 2009 8:28 am
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Joined: Fri Jan 02, 2009 12:29 am
Posts: 11
Post Reply to All
Hi everyone,

Thanks for all the wonderful input. Yes Irene some names of doctors would be wonderful.. Her current Doctor Is Samanta.
I have been driving myself a little crazy trying to figure out what Mom has PD or LBD. I guess the bottom line is it really doesn't matter we just need too treat the symptoms. I read the Boeve Continuum
and at this point it seems that if Hallucinations came first before PD it could be LBD and it can still be LBD and PD or PDD ect. As I recall alot of the symptoms came at once. We thought maybe the hallucinations were because of PD meds. Over the course of 7years she has continued with the hallucinations no matter what they have changed in meds. I do know my mom has almost every symptom on this list in the Boeve Cont. I was told the PD and the Meds to treat it can cause all of the symptoms listed . Also, she has just recently (since infection) gotten alot worse with the symptoms.
Bottom line is time will tell and whatever is happening It is worsening.
I guess I am trying to understand what to expect and how long we have
from this point forward..

Thanks to you all,

Confused PeggyP


Sun Jan 04, 2009 12:30 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Peggy,
I will send the list privately, so it doesn't take up too much room here.

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Irene Selak


Sun Jan 04, 2009 3:47 pm
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Joined: Fri Dec 19, 2008 1:29 pm
Posts: 3
Location: Liberty Missouri
Post Medications
Peggy, I am very new to this site but I do know that when my mother took Levadopa, she began to hear things, which really scared her. The med was prescribed to treat the Parkinson symptoms and we were told that hallucinations may be a side effect. She didn't want to continue with the med so her physical problems have become worse. As stated in my post, we are seeing a new neurologist in two days and I'm on pins and needles hoping to get a clearer diagnosis and next steps. Best of luck in your search as well.


Mon Jan 05, 2009 7:30 pm
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Joined: Fri Jan 02, 2009 12:29 am
Posts: 11
Post Thanks BBreit
That is one of the confusions for me is it the Levadopa or the LBD that causes the hallucinations. If I recall correctly my Moms hallucinations started before she began meds..But I do not know for sure. Does your LO
have PD and LBD?

Thank,
Peggy


Mon Jan 05, 2009 9:17 pm
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