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 New to Forums - An Introduction 
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Joined: Thu Aug 15, 2013 5:30 pm
Posts: 7
Post New to Forums - An Introduction
Good Day,

I am a new comer to the Forums, though, I have viewed over the course of the last month. My Mother, age 77, was diagnosed with LBD in early August, 2013, after 5 months of going through the ringer. She suddenly took ill in March of this year, where she had been a fully functioning, active retiree living with my Dad. One week she was doing laundry for my daughter who was home on spring break, and two weeks later was walking complaining about almost everything and barely functioning. She came down with a bad stomach virus, which we also feel debilitated her condition that much more.

Her former GP prescribed 4 anti-depressants over the course of 2 weeks. We tried the first two, one of which was Lexapro which did not work 3 years ago when he thought she was depressed, and then he gave her two more when her chief complaint was not sleeping. By the end of April, she was so so restless that she was admitted into the hospital. I now believe it was Akathisia which caused this, given she had the class symptoms but she also developed a tremor in her right hand.

MRI, CT scans and even the new DATscan for Parkinson's all showed what is normal volume loss attributed to a 77 year old woman. We took her to a Lyme Disease specialist, where all of those blood tests were negative. She was hospitalized twice in April/May, and sent to a nursing home for Rehab, where they administered benzo's and Risperdal to keep her quiet. When she was discharged, we started with a new GP and brought her to my home to recouperate. It was suggested that we wean her off the anti-psychotic drugs but the doctor in the nursing home had prescribed them and the new GP did not want to touch them. I made an appointment for an Psychiatrist but before that appointment, Mom started to refuses ALL her medication. We did have a psych nurse assigned from home health care, who came, took one look at her and advised us to take her to the emergency room.

The first ER visit, they gave her Haldol and they discharged her in 4 hours. We brought her home, where 5 days later, she was taken once again by ambulance back to the ER, where they admitted her into the Psych Ward, and she spent 9 days there. During this time, they did another MRI and the Neurologist saw something on the back of the brain which he said was indicative of Variant CJD... which is Mad Cow Disease. The radiologist read it as a reversible encephalopothy possibly caused by hypertension or drug use. Given she had refused her medication, to me it was quite possible given she does have high blood pressure and hadn't taken her medication. Neurologist suggested a tissue biopsy of her tonsils, which the ENT doctor did not want to perform as it would be done under general anesthesia, and he did not want to compromise her medical condition.

After 9 days in the Psych Unit, she developed a bleeding ulcer and had to be transferred to the Medical Unit, and have two transfusions. Four days later, she was discharged.

Upon discharge, I sought out specialists at University Hospitals. Being in New York, there are a few, and I made the appointment at the Columbia Neurological Institute in New York for Mom to be seen as an outpatient. It was time to get the best involved and finally determine what was going on. When the Neurologist saw her, she was in pretty good condition. She was as sharp as a tack, was walking pretty good and able to comprehend and express how she felt. This is not the mind of a person dying from Variant CJD! Given all she had been through, the Neurologist decided to admit her to Columbia Millstein Hospital.

Mom spent 3 weeks there, where originally we were told it would only be days. First, they ruled out Variant CJD and then they weaned her off all medication to see what she was like without any. It was horrific to see, where they had her vested in bed, so she wouldn't get out. They ran MRI, EEG and brought in numerous specialists to see her. She was seen by Motor specialists, Dementia specialists and even the Chief of Neurology came to see her. They finally settled on LBD as the diagnosis and put her on Seroquel and worked on the dosage in order to send her home. She was significantly impacted with bowel and they also had to clear her out before discharge.

She now sees one of the specialists at Columbia as her Neurologist and we have become very trusting of him. Mom and Dad are staying with me as I work at home and between the two of us, we can care for her. We have Home Health Care coming in during the week to check on her, whereby physical therapy has discharged her given her mobility is good.

We've seen the Neurologist once already as outpatient, and he tweaked the medication given she was putting herself on the floor quite a bit. Seemed we were going pretty good from mid-August until last Friday, where now Mom is very very dizzy, sees double and is sick to her stomach in the mornings. I have a call into the doctor now to seek guidance on what to do.

I still am having a difficult time wrapping my arms around the diagnosis and to some degree I think part of me wants to believe it was all the * of drugs which caused these symptoms. Mom is extremely depressed, scared to go in the car, though she is eating and finally sleeping better than she has in months. At times, I can have a normal conversation with her, then at other times I cannot...

Thank you for giving me the opportunity to introduce myself. God Bless.

Tue Sep 03, 2013 12:48 pm

Joined: Sat May 25, 2013 3:53 pm
Posts: 330
Post Re: New to Forums - An Introduction
Welcome to the Forum! It sounds like you've had quite the journey already. If it is LBD that your mom has (and it sounds like you've found a qualified neurologist to make that diagnosis) you've still got a roller coaster ride ahead of you. If the docs can get your Mom on the meds that work for her, the ride will be a lot easier but everything changes with LBD so even when the drugs do work, after a while they won't and something else will need changing. So keep in contact with that neurologist - you'll need him/her. Then, enjoy talking to your Mom when she can. It always came to me as a bit of a surprise when my Mom was back to herself - it kind of sneaks up on you. The other times you have to humour her and keep yourself calm. Come back to the forum with anything you want to share, questions, etc. There's lots people with lotos of expertise and experience here!

Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.

Tue Sep 03, 2013 6:59 pm

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: New to Forums - An Introduction
Welcome, and I hope you'll come back often for support and information. 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.

Tue Sep 03, 2013 10:51 pm
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