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 My Wifes condition. 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: My Wifes condition.
You may know that the medication that comes recommended in LBD (AChEIs - Aricept, Exelon, Razadyne) is *not* recommended in bvFTD. So maybe it's a good thing they didn't start you on medication when they first saw frontal lobe atrophy. We know more about bvFTD now than we did then. And we still don't know enough.

Sun Apr 17, 2011 2:54 pm

Joined: Thu Apr 14, 2011 1:18 pm
Posts: 5
Post Re: My Wifes condition.
I think I mentioned that my wife is currently in inpatient care where she is being seen by various doctors.
Today they are scheduling her for another MRI and EEG, as well as doing more blood tests(they've taken blood every day since she got there) and changing her meds up again they have moved her from 75 mg wellbutrin twice a day to 300mg once a day. with more changes yet to come.

Mon Apr 18, 2011 12:51 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: My Wifes condition.
Dans326, Getting the right medications at the right dosage in the right combination is a big, big job. One size does not fit all! A certain amount of trial-and-error is inevitable. Several members of my local support group have had their LOs treated on an in-patient basis just to make medicine adjustments. I'll bet that feels really frustrating! On the more encouraging side, the right combination of drugs can make huge contributions to quality of life.

Hang in there!

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Mon Apr 18, 2011 2:23 pm

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: My Wifes condition.
I agree finding the right combination of drugs can really make things so much better and I hope for that in your wife's case, I am sure she didn't bargain for any of this either.

Irene Selak

Mon Apr 18, 2011 3:49 pm
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Joined: Sat Jan 17, 2009 1:27 pm
Posts: 29
Location: Maryland
Post Re: My Wifes condition.
May I be so bold (if your not there already) run do not walk to the Mayo Clinic? My sister was in her early 40's when diag with LBD at Johns Hopkins of Baltimore - well - I personally would not not take my dog there for a rabies shot! Just my opinion. YOU are her best and only advocate, the more opinions the better and the Mayo Clinic is the best I hear.!
Good luck, my thoughts and prayers are with you both.
PS My sister was born with brain damage and 2 years into Hopkins having been diagnosed with LBD the Diag of LBD was suddenly expunged???? Some Dr decided a retarded person could not have anything else BUT retadation wrong with her. Now her hallucinations are back with a vengance and she has every symptom in the book. Her charts now say mild dementia. Wrong!

Mon Sep 05, 2011 10:25 am

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: My Wifes condition.

I know how alarming these individual symptoms can be. I, too, deal with tremors in both hands, the dominant hand (left for me) being far worse than the right. I have some pretty significant memory issues and I, too, have heard voices, for me what seems like a radio, but even when there is a radio around, it isn't on. I also have sleep issues. I have neuropathy and degenerative disc disease, so difficulty in my gait could be from those. Dementia runs in my family, so it was the first thing I thought of, too. As I am the primary caregiver for my mother, who has a diagnosis of LBD with parkinsonism and AD, I have thought my problems could be attributed to caregiver syndrome. I've been asking every expert I know (and, as I work at the U of Mn, I know or have access to quite a few) how to tell the difference between caregiver syndrome and early dementia. So far, no diagnosed dementia. But it is worrying me so much that I have become a bit more active toward finding what is going on.

My neuropathy was diagnosed at one of the biggest and best neurology clinics in Minneapolis. So I went back there with my worries. The neurologist who originally saw me recommended that I see one of his colleagues who has expertise in cognitive issues. Here's what he said (very paraphrased).
Every one of these symptoms can be attributed to anything from vitamin deficiencies (D and B-12, particularly) to sleep apnea, dementia, yes, but only after eliminating simpler diagnoses. While I wanted to jump to a DaTscan right away, Dr. J said we weren't there yet. Even with my family history (3 generations of dementia affecting the majority of those generations). The course he has recommended is to start with an MRI, plus a battery of lab tests, then the vitamins. I will also be seen at their sleep clinic to find out if sleep apnea is the problem, or part of it. Then the cognitive tests. Then review the results of these and see if anything has helped, and if more testing is indicated.

My point here is that it is very easy to jump to the worst diagnosis we can imagine, especially when all of the symptoms seem to be there. But the combination of these symptoms can also indicate a dozen other things. I know it isn't any good to say don't panic. Some would tell me to heed my own advice. But don't panic. And don't look for a doctor based on whether he/she confirms your diagnosis or not. Look for one that will do exactly what Robin did - look at each concern and address each one by one.
LBD is a diagnosis that is easy to come to as a layperson, especially if you are thinking dementia in the first place. But guard against making your own diagnosis. That said, assuming LBD will at least inspire caution with medications.

Also, be cautious about adding certain vitamins to your wife's diet. My sister, a registered dietitian, tells me often that it is very possible to do harm to yourself by taking to much of some vitamins. It is wisest, if you are looking at supplements to improve the situation, to talk with a dietitian and doctor to be sure you aren't overdoing it.

I also wonder what state you are in. It sounds like medical care is in abundance. But you may not have practitioners specializing in memory or cognitive issues. Look for practitioners at what might be called "memory clinics." They are normally neuro-psychiatrists or neuro-psychologists. Or, it could be a large neurology clinic with specialists in cognitive issues. You are allowed to ask doctors questions to find out their level of knowledge in the areas that concern you. By all means, seek second and even third opinions. But listen to what you are told. It may be LBD, but it also may not be. And if it is not LBD right now, that doesn't mean that she will never have LBD.

You and your wife must have a very strong relationship. It is very hard to tell someone, even family, about some of these symptoms. For her to share with you what she has been experiencing took a lot of faith in you and your commitment to her. I have yet to share some of this with my own family.

Finally, pay attention to the information shared here. There are a lot of experts here, through both experience and study. Listen to Robin. She is so well informed, it's sometimes amazing how much she knows. Listen to others here. There are medical people here who have their own personal experience with LBD, even researchers, also having their own caregiving experience. Even if it doesn't turn out to be LBD now, hang around. There are obviously LBD-like concerns you have and we are happy to have you with us. If Wendy needs some support, encourage her to check in here, too.

Hang in there. It's a long road to even be sure of LBD. We'll be here with you all along the way.


Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]

Mon Sep 05, 2011 11:49 pm
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