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Joined: Thu Jun 03, 2010 3:46 pm
Posts: 2
Location: Lake Oswego
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Hello to Everyone,

I just joined this forum. My dad was recently diagnosed with LBD after being tentatively diagnosed with Parkinson's. I say tentatively because two doctor's said that he PROBABLY had Parkinson's but weren't 100% sure because he still had so much flexibility.

My dad just turned 76 in April. He lives in Ventura County, California. My siblings and I think somehow he has been able to mask his symptoms by being in incredibly good physical shape. Also his regular blood work showed a very healthy man. He was working out many times a week up until a year ago when he began to reduce his workout sessions due to increased anxiety. He initially went in for treatment for the anxiety. but along with that we noticed a lot of weight loss which we all went on the Internet and decided it sounded like orthorexia. So we all thought that his anxiety and orthorexia were kind of self induced. But really there were other signs that something was amiss. He would kind of forget recent conversations, He lost interest in using his computer, desired less interaction with people such as church and family functions. In other words less interest in outside activities. He also was experiencing what I now think was REM sleep disorder.

His stooped posture and slower walk began to appear more pronounced maybe 7 months ago. This is such a long story! Anyway, during all of this time he was seeing a regular doctor, psychiatrist, psychologist, neurologist, naturopath and dietitian. No wonder his wife is so worn out! That was a lot of appointments. The only consistent medication he was on all of this time was Celexa which the most recent neurologist pulled him off of two days ago. He has had a few delusions such as thinking his "real" wife was not there when in fact she was. He was hospitalized last week for several days and is now in a skilled/memory care at a very expensive facility near his home. So now we have to find a different place for him. We are waiting until July 8th when he has his first appointment with Dr.Hutchman in Reseda. Do any of you know about this doctor? Oh my dad was put on a very small (.5mg) dosage of Azilect the other day. He had tried this a couple of other times as well but taken off after short periods. Ok that is it for now. I am tired of writing. Oh one more thing. He is so uncomfortable sitting in one place. He wakes up all night long and can't seem to focus for long on anything. The general doctor and others say that it is an incredibly fast decline. I feel like he has kind of slipped through the cracks and no doctor has taken charge or an interest in him to really help him. We are so looking forward to seeing Dr.Hutchman.


Sun Jun 06, 2010 1:45 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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Sorry you've had to join us here.

I think Dr. Hutchman is a very good MD for PD. I'm not sure about LBD. But since PD and Lewy Body Dementia are both Lewy body disorders, there are many similarities, so you are probably in good hands.

Someone else who used to be a member here had a father living in Oxnard. The father saw Dr. Hutchman and was very happy with him. I don't think she's shared her father's brain autopsy report here but I think I can say that Dr. Hutchman was mostly correct. (Dementia with Lewy Bodies is a very difficult diagnosis to be accurate with. I encourage you to consider brain donation for your father. I helped the Oxnard family make the arrangements and I believe the cost to them was $800.)

If you do a search here of past posts containing the name "Hutchman," I think you will get some different views.

I suggest you read the 2004 Dr. Brad Boeve "Continuum" paper on lbda.org. It provides a good treatment regimen for LBD. Don't be surprised if Dr. Hutchman puts your father on more meds than just an antidepressant and Azilect. It would be good if your family could study these medications in advance of the appointment.

Good luck,
Robin


Sun Jun 06, 2010 2:29 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3305
Location: Vermont
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Hi Karen - welcome to the forum. You'll find lots of supportive folks here who have been in similar experiences to what you are in. There is a lot of helpful info. too. The chat is a great place to vent, make friends who are "walking in your shoes" too, as well as get advice.
My dad experiences HUGE declines in his mental and physical health. He hid his dementia well for quite a while - like about 2 - 3 years. His mobility was going downhill, but friends and family thought it was because of his hip replacement and inactivity. Then we were told last year he probably had Parkinson's. 3 weeks after being told that he was almost as helpless as a newborn, hospitalized, rehab, then to an ALF. He regained some physical abilities for a while, but now he is back to almost newborn needs. Apparently these huge declines are pretty indicative of LBD and some other types of dementias.
I know how exhausting, frightening and helpless you must feel - been there, and have finally gotten to a point where I am somewhat in a routine in dealing with all that must be done. Visit the forum often! Lynn


Sun Jun 06, 2010 8:09 pm
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Joined: Sat Mar 27, 2010 6:15 am
Posts: 44
Location: USA
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Hi Karen,
Glad you found this forum as I did. It is very helpful. I find reading other caregivers post help me to remember things I need to mention to the doctor.

It helps me because there are people on here that have very similar experiences to my like Lynn,LTCVT with extreme flucuations. It almost makes you feel like you can cure them and get them back up and going again when they have really good periods.

I hope when the doctor pulled your dad off Celexa he reduced the dose and did it slowly. When I came off celexa cold turkey I would get dizzy and have weird noises and sensations when I turned my head. Taking 1/2 a Celexa would stop this awful feeling. I am off it now but thinking of going back on it at a smaller dose to improve my depression and hopeless feelings.

The people here help so much with support and information. They give you the courage to face doctors and make request when you yourself are starting to feel like you are going nuts.


.


Mon Jun 14, 2010 3:30 pm
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