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 "Lewy Body Disease, What's That??" 
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Joined: Tue Nov 23, 2010 12:20 am
Posts: 31
Location: Outer Banks, NC
Post "Lewy Body Disease, What's That??"
Hi everyone. I'm so glad that I have found you!!

I've been reading the forums since I stumbled across the site in October. In Aug. the neurologist mentioned Lewy Body as one of the possible diagnoses for my mom. We had the same reaction as everyone else who hears the name. "What's that, I've never heard of that disease!" It has been 1 1/2 years since we first visited the neurologist for confusion and loss of balance. We had 3 different sessions with physical therapy for balance issues before we finally ended up at the neurologist. She had the range of neuropsychological tests which all came back impaired. At that time he said that we would know something in a year as symptoms progressed. Over the year she exhibited increased problems with balance, a shuffling and speedy walk, numerous falls, increased confusion with time and space, short term memory loss, cognition, depression and anxiety, resting tremors, and finally some hallucinations.

We could not believe that this was happening to my mom. My dad passed away 2 years ago right before Christmas from a fall and a brain bleed after battling Parkinson's disease for almost 15 years. My mom was my dad's sole caretaker until we stepped in to help full time during the last 2 years. His last 5 years were difficult with faulty reasoning, dementia, repeated falling, and general wasting away. Care-taking took its toll on her and I'm sure that she held herself together with tape until his death. After that, she started a steady decline mentally and physically.

In June, mom fell and fractured her wrist. She actually had a cardiac arrest the next day in the ortho doctor's office caused by low potassium. They did cpr and flew her to the heart institute which saved her life, but her life has been impossible since. It seems that our world has turned upside down. Her condition went from possible Parkinson's or Alzhiemer's the previous June (our first visit to the neuro) to a full blown case of something very bad. She has not walked since that fall even though she spent 4 months in rehab where we stayed with her 24/7. Yes, we slept there in a recliner because she was so out of control and helpless. She could not stand or bend into a sitting position, feed herself, and had trouble swallowing. Sometimes she did not sleep for days, and then she would be asleep for days. She was beyond confused, the hallucinations which started in the hospital as sundowner's became more intense and the delusions started.

The rehab doctor could not reason why she was in such bad shape and the physical therapists were also confused because her muscle reflexes and strength were adequate for walking. The rehab doctor finally decided that a heart drug (amioderone) may have exacerbated her possible Parkinson's symptoms and that the trauma made the confusion we had been noticing worse. At times it seemed as if she had had a stroke. Finally the physical and occuaptional therapists at rehab said that she was not making progress because she was unable to follow simple directions cognitively or physically, so they stopped working with her. So we accepted that rehab had run its course.

Before we left rehab, we got a neurology appt in August. The week of her cardiac arrest, we had missed her second 6 mo check-up with the neurologist. At that time he suggested that we try some parkinson meds. My dad had been on so much medication sometimes we did not know which was worse, the disease or the cure. Also we didn't know if she was experiencing side effects from the meds received at the heart hospital. (I believe that she was given Risperadol for agitation and sundowner's syndrome while there.) So we decided to wait until there was a more specific diagnosis and at the follow up appt we heard the term Lewy Body Disease for the first time.

Since Sept, we have been at her home with hospice care 3 hours a week, plus one hour of nurse support. My brother, sister, and I still share caretaking. We have tried a sitter occasionally, but she becomes paranoid and violent. She is confined to a hospital bed but believes that she can walk and often emphatically states that she has been walking around the house all day! However, it is not her house; she does not believe that she is at her house, we are holding her hostage somewhere else. Her delusions are pretty much non-stop. She thinks that my dad is still alive and having an affair. She believes that her bed is a train and she is furious that we will not get the conductor to get her off the train. She is trapped in the past most of the time, and she is very, very angry that we won't take her to her childhood home. She can't believe that her children treat her so badly. One of us is with her around the clock and we are trying our best to figure out how to handle this horrible disease and ease her distress. We often comment that we thought my father's Parkinsons was difficult to manage his last 2 years, but Lewy Body takes the cake. And so it goes.

Reading the posts on this forum has sustained me over the past 2 months. They say that knowledge is power, and I have gained infinite insight into the trauma and drama that lbd families and caretakers share. Strength in numbers certainly applies here!!

Thanks for listening to our story!
Debbie and family

Debbie 57 daughter of Evelyn 82
When you get to the end of the rope, tie a knot in it and hang on!

Thu Dec 16, 2010 1:07 am

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: "Lewy Body Disease, What's That??"
Again, I welcome you, Debbie. It's such a tragedy to have to be here but what a blessing it is to hear from people who are going through the same ordeal. Now that she is on hospice, have they discontinued some of her medications? What seems to help and what seems to exacerbate her condition? You mentioned risperidone [in another thread I mentioned our terrible experience with that]--I assume she doesn't take that any more.

You will certainly be in my thoughts an prayers and I hope the nightmare will be over soon for her and for all of you. God bless you!

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.

Last edited by mockturtle on Thu Dec 16, 2010 1:17 am, edited 1 time in total.

Thu Dec 16, 2010 1:16 am

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: "Lewy Body Disease, What's That??"

My condolences on the loss of your father. Sounds like your family and your mother have been through quite an ordeal the last few years.

About the rejection of the sitter.... Have you tried having a "friend" (sitter) over several times with you or your brother there, and then announcing that something has come up and your "family friend" will be staying with mom for a few hours? This approach has worked well for some in our local support group.

Does your mother have any friends who can come over occasionally to give you and your brother respite?

Hospice sure isn't giving you much time. Do they have any volunteers that can come over occasionally and be with your mom? What is hospice doing in terms of medication?


PS. Some with LBD can take Risperdal while many cannot. These drugs are all crap shoots.

Thu Dec 16, 2010 1:16 am

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: "Lewy Body Disease, What's That??"
I also would like to welcome you and yes you and the family certainly have been through a great deal in last few yrs and I also extend my condolences on the loss of your Dad, Risperdal was not a kind drug for us either.Perhaps the Dr can write for more hours for Hospice services !

I am sorry for your need to be here but as you mentioned education is power in this illness !

Irene Selak

Thu Dec 16, 2010 8:56 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: "Lewy Body Disease, What's That??"
Debbie - welcome and I am so sorry for all you have been through and are going through. One family member with this type of situation is bad enough, I don't know how you are able to cope at all with another close family member with such an awful condition.
I wish you the best, and come back here often to vent or whatever you need. Lynn

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.

Thu Dec 16, 2010 3:23 pm
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