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 Newcomer with LBD mom 
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Joined: Thu Jan 28, 2010 4:42 pm
Posts: 59
Location: Florida
Post Newcomer with LBD mom
In May 2004, my mom suffered an acute stroke on the right side of the brain and also received a pacemaker. Following extensive therapy, she came home with no walking aids and with the exception of some depression and occasional weakness she was did pretty well for several months. Between June 2005 and April 2006, she began experiencing more mental issues—unable to solve problems or reason things out, had difficulty following conversations or TV shows, became repetitive, would forget words, began to focus on herself in conversations, got confused easily, and had diminished writing ability. Then her balance became unsteady and she fell several times incurring multiple rib fractures, so she began using a quad cane. In Jan 2007, both her mental and physical health had declined considerably so her primary care doctor ordered a CAT scan and thought she may have early signs of Alzheimers. She began using a walker and fell twice in Jan 2007, suffering multiple fractures and was hospitalized for pain management. I was staying in the hospital with her and an episode occurred where she was trying to squat down over the toilet and her limbs just “froze”. She couldn’t get down nor could she stand up. While there, she experienced numerous hallucinations and talked constantly during the night (caused by meds she shouldn’t have, I’m sure). The doctor prescribed Aricept 5 mg. After a week’s stay, she was moved to the rehab wing for three weeks. She now required assistance using a walker so I hired 4 “around-the-clock caregivers to help her at home as I lived in FL & she in KY. She was married but he was elderly with health issues too. She went for 3 months to outpatient physical therapy and improved some, but continued to have memory problems, nightmares/dreams with acting them out with her voice, arms, and torso, sleeping a lot during the daytime, being confused, and having weak episodes. She had a bad nightmare in May 2007 that she and her caregiver were being raped and she fell trying to get out of the bed. She hit her back on the closet doors, which resulted in a compression fracture requiring a kyphoplasty. She thought Aricept was causing her nightmares so the doctor stopped it and began Namenda (10 mg) and Razadyne (8 mg, progressing to 16 mg). Outpatient rehab was discontinued for two months but resumed July-Oct 2007. Then she began to digress so they recommended home physical therapy. She continued to grow weaker and her mobility was declining so she began using a wheelchair most of the time. In Dec 2007, neurologist Dr. David Blake, Lexington, KY, evaluated her. He reviewed several months of caregivers’ diaries, interviewed my brother, myself, and a caregiver, and reviewed over 50 pages of notes from her primary care doctor and her outpatient PT. He administered a mini-mental state exam, cookie theft test, and fund of knowledge test. He ordered a second CAT scan to evaluate changes from the previous one taken a year ago. At this time, her gait was tremendously impaired; she could not stand alone or walk far with her walker without someone holding onto her. She required full assistance with dressing; her legs and trunk were becoming stiff at times and she had also become incontinent several times a week. He did not see this as a presentation of Alzheimer’s, frontotemporal dementia, vascular dementia, multi-infarct dementia, or progressive supranuclear palsy. He also said she lacked the typical features of idiopatic Parkinson’s disease, and ruled out corticobasal degeneration, Huntington’s disease, normal pressure hydrocephalus, and Prion disease. He “clinically diagnosed” her with LBD and agreed with the use of Razadyne and Namenda and suggested the Exelon patch might be tried later. He said it was a progressive disorder of two or more year’s duration with significant motor and balance impairment, gait instability and dementia. Between Dec 2007 and May 2008, she continued to have ups and downs mentally and physically and Dr. Blake saw her again in May 2008 and he again gave her a “clinical diagnosis” of LBD. She continued with the same meds. In Jan 2009, she was hospitalized for 2 weeks for volume depletion and bronchitis, which developed into pneumonia. Three of my four caregivers quit, so I brought her home to FL to live with me in March 2009. Her husband was also to follow, however, he had several health issues, and passed away in July. Also in July mom fell, suffering another compression fracture leading to another kyphoplasty requiring hospitalization. Her health deteriorated rapidly in the hospital so I brought her home and began with hospice. I use a hoyer lift to move her from her hospital bed to her lift chair or wheelchair. She requires full assistance with all daily activities. She continues to verbalize and act out dreams and when she wakes, she can’t distinguish between reality and dreams. She has “seen and talked” with deceased people and has had little children sleeping in the bed with her but this doesn’t seem to upset her. The worst delusion she has experienced was that she herself was "dead" and this went on a full day and neither I, my husband, nor our chaplain could convince her she hadn't died yet! She “travels” a lot in her dreams, cooks meals, teaches classes, and prays. She frequently talks the entire night. She usually sleeps 12-14 hours a night :) and daytime sleep varies. She leans heavily to the left, has occasional problems with chewing, swallowing, is frequently incontinent, has had changes with body temperatures, voice has become very faint at times, her facial expression is rather blank and emotionless, hands tremor constantly, legs and trunk are stiff, and she has no concept of time, days, or dates. Most of the time, she knows whom everyone is and on good days can make intelligent conversation, although she doesn’t talk a great deal. Her appetite is still good. Her meds are Amiodarone, Synthroid, Namenda, Razadyne, Celexa, Simvastatin, Folic Acid, Ambien, and Prilosec. I’m sorry this is so lengthy but I wanted to give a full picture. I have been accessing this forum since 2008 and am so grateful for the wealth of information and advice that it provides. :)


Mon Feb 01, 2010 11:44 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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kitkat,

Sorry to know about your mother's tremendous decline and the passing of her husband. I'm sure your mother would be very proud of all that you've done for her.

Dr. Blake gets a gold star! Is he at the Univ of Louisville? What is the cookie theft test, by the way?

I'm really surprised that your mother is taking no medication for the RBD (REM sleep behavior disorder). This is often treated with Klonopin. And I'm surprised she's not being given an antipsychotic (such as Seroquel) to help with the hallucinations. Have you considered those sorts of meds?

As you are in Florida, it's quite easy to make arrangements for brain donation to Mayo Jax. Let me know if that's of interest and if I can assist in those arrangements.

Good luck,
Robin


Tue Feb 02, 2010 2:12 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
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Good morning Kitkat - my heart goes out to you and your mom. This is such a difficult disease to deal with (and even get a diagnosis for, as you have experienced until recently).
You are certainly among friends here, who can give you a ton of moral support as well as a huge volume of information.
If you haven't been on the chat yet, you may want to try that as well - I've been making some wonderful friends in both the forum and chat. Don't ever be afraid to ask for support - there are so many talented and caring people involved in the LBDA site I am sure you'll find what you need.
Take care, Lynn


Tue Feb 02, 2010 9:09 am
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Joined: Thu Jan 28, 2010 4:42 pm
Posts: 59
Location: Florida
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Thank you for your support and encouraging words. Yes, this year has been extremely difficult, especially with the passing of mom's husband. It was a difficult decision to bring mom here when he was still sick and actually in the hospital. But he had a daughter who live there who was taking care of him. He got better and had bought his plane ticket and was ready to fly here but died 2 days before coming! Of course, we couldn't take her to the funeral but we had a memorial service at our church as my husband is a pastor, which helped her tremendously. Dr. Blake is in Lexington, KY and is probably associated with Univ of Ky but is in private practice. He came highly recommended by several doctors and friends. Robin, I would appreciate your help with brain donation. In fact, a few months ago I called the Jax Mayo clinic and spoke with someone in the neuro dept about brain donation. They told me that unless mom had been one of their patients, they couldn't help me. I even asked them to double check and call me back, which they did. So if you can help me with that, please do so. The cookie theft test was bascially a pic of a child standing on a "precarious falling stool" trying to reach a cookie. Water was overflowing from the sink to the floor also. Mom was able to make a partial interpretation of the picture but she couldn't perceive all the dangers portrayed. Robin, we haven't tried any meds for the REM or hallucinations simply because mom doesn't seem to be terribly disturbed by anything she dreams about (except for the rape dream) and I hate to try meds that may cause worse reactions. Dr. Blake sent a letter to her primary care dr stating he would recommend Seroquel and Carbidopa/Levodopa, and the Exelon patch if she needed them. But I was hestitant to try these. (I went to KY 4-5 times a year, staying 2-3 weeks at at time to give caregivers a break and I was always with her during the hosp and rehab stays and saw how new meds affected her). Anyway when I read about others on this forum with LBD, mom's LBD doesn't seem to be nearly as bad, which I'm thankful for, but so sorry for others. Her dreams/hallucinations aren't usually disturbing and she doesn't seem to be really that bad to me so unless they worsen, I'd rather just not add any more meds. We're blessed with a wonderful hospice situation (almost 6 mths now) with a nurse coming 2-3 times a week, chaplain every 2 weeks, and a dr every month or more often if needed. I also have a caregiver who works for us 20 hrs a week or more if needed and mom loves her. We live across the street from our church so when she's up to it, I "wheel" her to church and take her for strolls in our "next door" cemetary! I never try to take her in a car anymore as we just can't lift her without danger of fractures. But, I am truly blessed to have her with me and have great support from my husband, adult children who come to visit her, and my church family. From here on, should I begin posting under the other topics? Again, my gratitude goes to this forum, Irene, Robin, and all of you that are here. I have received a wealth of info and have read Boeve's article many times along with all the other suggested readings. The posts from everyone has taught me so much and I have laughed and cried with many of you at your stories. God bless.


Tue Feb 02, 2010 10:34 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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kitkat,

Sounds like you are doing a great job.

Please send me an email (not a PM, private message) about brain donation. There's an email button at the bottom of each of my posts (because I've listed an email address in my profile).

Thanks,
Robin

Update a bit later....I got your email but it seems may've you haven't recvd my reply. Check your spam folder?


Tue Feb 02, 2010 10:56 am
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