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Joined: Fri Dec 19, 2008 1:29 pm
Posts: 3
Location: Liberty Missouri
Post Newcomer
This is my first post to this forum. I am hoping to share my story as well as get ideas and feedback from those who are experiencing the same challenges. I have read many of the posts here and my heart twists as I read familiar and unfamiliar circumstances that you all are working through. My mother was diagnosed with Alzheimer's three years ago this month. We saw changes in her a year previous to that but she and dad lived away in their retirement dream home and we suspect that dad kept some of the problems from us for quite some time. Eventually, he saw that they needed to move closer and did three years ago. At that time, mother had a "vivid dream" that her brother (deceased) was at the door and, as dad sat sleeping in the chair, she left the house at 10 pm. The situation ended with her being found quickly and in safe condition but it was at that time we saw a neurologist. Through the battery of tests, she was diagnosed with Alz. A year later as many motor functions started to deteriorate, the diagnosis was changed to LBD. Soon after that the neurologist abruptly retired and we were sent to a new neuro that treated us as if we were a number and said we were doing all we could for her. She was and still is taking Aricept and Namenda. We studied up on LBD with sites such as this. Dad was determined to take care of her and it looked as though she was going to be the first to go. Little did we know that a few months later dad would be diagnosed with terminal lung cancer. In less than a year, this Oct. my dad died. He and mom having been living with my husband and me since April. With the help of hospice, we were able to keep dad home during his illness. Mom did remarkably well during those last two months of his life (she was a career nurse) but since Oct. I have seen a marked decline in her motor skills, speech and now her memory. The thing is, that was the only hallucination that she has had and everything I read reflects that is the primary symptom of LBD. I'm confused as to whether she really does have this or she has been misdiagnosed once again. The major symptoms she has had for quite awhile are a change in her demeanor, masking, drooling and constant runny nose and tremors with weakness in her arms and hands. She shuffles stiffly in a forward motion and has difficulty getting her feet to go where she wants them to. She has had difficulty processing information for a couple of years but that is getting worse and this week she couldn't remember my sister's birthday or middle name - something very telling to me. However, no real argumentativeness or hallucinatory problems. I will say that last fall she tried one fo the meds for parkinson's and she was up throughout the night hearing cats and people talking. She was taken off of that immediately but that is as close as she's come to those symptoms. Can a person have LBD without these symptoms? We are going to a new neurologist in a few weeks and hope we get some more definitive answers. I was wondering if anyone or their loved one has had so many of the LBD characteristics without having the hallucinations.


Mon Dec 22, 2008 3:51 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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BBreit --
Welcome (and sorry you had to join us)...

My husband was dx'd with LBD at the Mayo Clinic. In five years, he has had only one hallucination and no aggression. LBD manifests itself differently in different folks and can have a vary wide variety of reactions to the same medication. Good luck with your appt. and let us know how it goes!

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Renata (and Jerome-in-Heaven)


Mon Dec 22, 2008 4:34 pm
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Joined: Sat Oct 06, 2007 4:28 pm
Posts: 693
Location: LA
Post Welcome aboard, friend
This forum has been a lifesaver [I use that word sincerely] to me and my loved one, Mr Bobby. My guess is that you lucked out by having the Aricept and Namenda prescribed for your mother early on. One of the maddening things about LBD is the way the person changes from day to day, minute to minute causing the family to think, "Hmm, I wonder if the doctors really know what this is?". You have my admiration for all you have done for your parents and what you continue to do for your mother.

Others will tell you more that you need to know before seeing doctors again but I just wanted to say we all have the same situation as it sounds like you have but we all have very different situations with the common problem. We seem to be mixed and matched with the symptoms.

We Care.

Dorthea

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"See this lady, she's 85, but she's nice"


Mon Dec 22, 2008 5:48 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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BBreit,

My condolences on the recent loss of your father.

The best info on diagnosing LBD by virtue of symptoms is here:
http://www.lbda.org/category/3438/symptoms.htm

As you can see, continued hallucinations are not a required symptom of LBD. The only required symptom is progressive dementia.

Of course most of the symptoms you mention are elements of parkinsonism -- motor skills, speech, masking (I assume you mean her face has a masked, expressionless look to it), drooling, runny nose, tremors, weakness, and shuffling.

I suggest you find an LBD-savvy MD (either neurologist or geriatric psychiatrist or both). Is the new neuro you are seeing LBD-savvy?

And I hope your mother is signed up for brain donation as it's the only way to have a confirmed diagnosis. (Most people don't have *only* LBD -- they have LBD and AD.)

Good luck,
Robin


Mon Dec 22, 2008 6:43 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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BBreit,

Welcome. I am new to this site also, having joined just a few months ago. Wish I had joined sooner. The information and support from the other caregivers on this site will help to make your life more bearable. The knowledge and insight you will gain from the information and true life experiences are invaluable. LBD is a very cruel and sad disease for both the patient and caregiver. The folks on the LBD site are kind, supportive and helpful. You will visit with people who truly understand what you are going through.

Dianne C.

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Dianne C.


Fri Dec 26, 2008 2:11 pm
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Joined: Fri May 11, 2007 12:54 pm
Posts: 115
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Dear BBreit,

I am so sorry to hear what you are going through. My sympathies on the loss of your father. You have been through a lot in such a short period of time. You are doing a wonderful job looking after your mother. It is a very difficult thing to deal with Lewy Body. It fluctuates so much that sometimes we feel like we are the ones with the mental problems. Keep reading the information on this sight and asking questions. There are so many knowledegable people on here and the support is priceless.

Write everything down about your mother. Her medications, her doctors, her health conditions, her symptoms (even if they seem unimportant), changes in behaviors, and things that she did that day (if you can). Everything seems to be intertwined with LBD and everything seems to affect everything else. I echo everyone else when it comes to the symptoms of LBD. Some loved ones don't have any hallucinations at all, but unfortunately, my loved one was plagued with them and had to take medications to control them so she would not act out or be terrified. The meds helped her for the 4 years she was diagnosed with this disease.

You never mentioned if your mom suffered from depression. A lot of LBD patients have depression. It can make the other symptoms worse, at least it did with my mother-in-law.

Also, my loved one suffered from REM sleep disorder. She didn't have to take medication for this, but it is something to be aware of.

I hope you have luck with the new neurologist. It is so important to have doctors that are familiar with LBD as you have discovered. Keep up the admirable work you are doing and I will keep you and your mom in my prayers. We all care and understand here.

Joyce K


Sat Dec 27, 2008 3:23 pm
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Joined: Mon Dec 29, 2008 9:57 pm
Posts: 4
Location: Florida
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Hi, Earlier this year my husband was diagnosed with Alzheimers. Later the neurologist confirmed he has Lewy Body Dementia. He has dementia, and parkinson-like symptoms,(walking mostly) that did not respond to Sinemet. We were sent on our way with little information. I've been on a ALZ spouse line but have gotten little info on LBD. I've read your site many times, but last night was the first time I stumbled on the forum. On there was a problem other people were having concerning sleeping too much. I was touched and encouraged by knowing that others are sharing the same problems we're going through. As a caregiver, I always wonder if I'm doing the right thing, are these symptoms the disease or something else. Thank you for your concern about the members of the forum. I'm always skeptical about joining anything on line.

This was the note I sent to get approval to be in this forum.

My husband also has not had hallucinations or dilusions. Thank God. And again thank you all for the info I've gathered alreadyfrom this site. Nancy :)

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nancy


Tue Dec 30, 2008 11:09 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Dear Nancy --
Glad you finally stumbled upon the forums. You will not find a more supportive or informative online group related to LBD. We all have that same fear about whether we're taking the best care of our LO that we can. Welcome (although I'm sorry for the reason that brought you to us).

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Renata (and Jerome-in-Heaven)


Tue Dec 30, 2008 11:45 pm
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Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
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Yes, welcome Nancy, this is a great forum and I have already learned so much from it and also when a question is asked there is always somebody there that is willing to answer. It is a very warm place to be, especially in the time of need, sometimes the problems seem huge and then once you have put them down and the answers start to come they aren't as big as you thought and that is just the knowing that someone is there to help you through all this. I am also very greatful that I was pointed to this forum as well. :)


Wed Dec 31, 2008 1:48 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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To the wonderful caregivers and all...

A VERY HAPPY NEW YEAR!

May 2009 bring us:

the strength we need to get through this trying time of our lives

peace for our loved ones

hope for future medical miracles of all dementia diseases

joy that we have this wonderful site and other caregivers for the support we give each other.

Yes, even though we are all going through this difficult world of LBD we still have much to be thankful for. I thank each and every one of you.

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Dianne C.


Thu Jan 01, 2009 1:54 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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mm
I can relate to your post whole heartedly. 7 years! I am only into this going on 4 and sometimes wonder how I will get through it. I only wish my LO was in a quiet state instead of the many arguments and belittling that goes on. When he is sleeping I close my eyes to the peace. We have changed meds so many times...they work for a month and then he is back to his bickering, picking, insults, etc. I find that the hardest part.
This weekend my son came to town for 2 nights. I didn't see him last night as my LO didn't want me to go out so I didn't. Today I went to brunch and looked at some family photos with my son at his hotel...he stays in a hotel as he won't put up with the verbal abuse here. I was gone a total of 5 hours including travel time. When I got home he screamed and argued with me for another 5 hours. Jealous of the time I spent with my son. I hope he goes to sleep early so I have peace.

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Dianne C.


Sun Jan 04, 2009 1:18 am
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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My Mother also seems jealous if I'm gone at all. I think a lot is fear based. -however they won't admit it. She doesn't get verbally abusive but will spend the next few hous getting into everything and making a mess.-kinda like a 3 year year old.
Sharon

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syt


Sun Jan 04, 2009 9:40 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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syt,

Posted my response under symptoms.

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Dianne C.


Sun Jan 04, 2009 11:31 am
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Joined: Fri Dec 19, 2008 1:29 pm
Posts: 3
Location: Liberty Missouri
Post Following Up
First I want to thank all of you who replied to my first post. We have now seen a new neurologist who confirmed LBD based on my mother's physical characteristics and our discussion. As I initially posted, mom doesn't have hallucinations and is not argumentative - her symptoms are primarily physical that resembe parkinsons. This doctor is having mom try Requip for the parkinsonism and there are some days that I think her hand tremors and general unsteadiness in her feet and legs are a little better. He also prescribed physical therapy to try to build her upper-body strength. We are hopeful that even if a couple of her physical challenges are relieved to some extent that this will help her outlook on her overall situation. She is still very clear about what she is going through. I have begun to notice that as she falls asleep in the chair in the evenings, she mutters, moves her head and opens her eyes as if she were awake but isn't. I don't know if this is significant or not. Thanks again for everyone's kind words of encouragement. I extend the same to you and your LOs.


Wed Jan 21, 2009 2:33 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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BBreit,

Would you recommend the new neurologist and, if so, what's that person's name?

The sleep talking is common as is appearing to be awake but actually asleep.

Robin


Wed Jan 21, 2009 3:13 pm
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