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 first post anywhere ever 
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Joined: Sun Aug 03, 2014 1:35 pm
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Hi,

I’ve never used any sort of interactive forum before so I am unclear how it works. I think this is right.

I first noticed symptoms and wondered if my husband (66yrs old) has Altzheimners in 2010 ( I keep a personal journal). By 2013 some close friends were recommending I get him checked out. By this year his Doctor (his sister) finally used the ‘d’ word in a conversation with us and is now ruling out B-12 deficiency ad sleep apnea. The hallucinations cinched it for me, but I am in no hurry to get a final diagnosis. My husband is only vaguely away that he might have something horrific. I got chided by the Dr. for suggesting we move faster on the diagnosis (by doing a blood test for B-12 anemia)

I have spent hour and hours on Google, that’s how I found you. I'm posting in hopes of getting some time sensitive questions answered.

My preference is to wait as long as possible for the diagnosis to come, so we can enjoy a month or a year without having our lives turned sour by a full realization.

But my husband spends his retirement time trading gold stocks on the internet and could lose our life savings in an hour. We are lower middle class people and even now do not have sufficient resources. I still work.
I need to know how fast the disease can progress, if it is an even pace or could he suddenly become worse and unable to grant power of attorney before he gets the diagnosis. I'm guessing it will take 6 months and some other, harder-to-ignore symptoms tat his sister sees).

He currently has most, not all, symptoms-memory loss, can't figure stuff out, cant find words, already had tremors from a familial palsy, sleep disturbances, dizzy when standing, two vivid hallucination while waking up, some incontinence, loose bowel, lets me drive, anger and depression symptoms were well taken care of with anti-depressant. He does not have wooden gait, Lewy lean, and is not falling more than might be expected.

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Prunerwoman


Sat Aug 09, 2014 10:19 am
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Joined: Sat Oct 06, 2007 4:28 pm
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Location: LA
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I think you are on the right path. Please continue the Journal. I would agree with everything you say except he should not have the power of the purse strings. Your life savings!!?? No no. Lewy Body Dementia requires money. A LOT OF MONEY. More now than when I cared for Mr B. ending in 2009. A fine line between standing by and watching and hoping and loving him so much you do not want to hurt him. Then waking up one morning wondering what next with fewer resources to have at your disposal.

Then I would add as much water, fluids, liquids into his system as possible. it could help with the falling.

Going slow may not hurt for the reasons you mentioned, especially since you have a doctor in the family. Maybe she could become your ally in searching this. She would have a better understanding than most of us if she will approach this with an open mind thinking , "what if". Is it possible?

Dorthea

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"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.


Sat Aug 09, 2014 5:51 pm
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Joined: Mon Nov 25, 2013 7:33 pm
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Location: Pennsylvania
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Welcome to the forum. I am sorry you suspect your husband may have LBD and need to be here, but you will find much valuable information here to help you navigate what may lie ahead. You might wish to pose your questions in the more specific topic headings to get more responses on a given subject.
In regards to your question about the pace of LBD disease progression, I think it is fair to say that individual experiences can be very unique in that respect. But, dramatic changes/declines in function can occur quickly, so in my opinion it would be best to address the POA issue sooner rather than later. The approach my dad took was for both he and my mom to have their POA documents done at the same time, so that mom didn't see it as just related to her need and our concern of her future incapacitation.
I would also be concerned about your husband having such autonomy with your finances. This certainly is a delicate issue, but it should be addressed.
Have you been able to share your concerns with the physician (husband's sister) about LBD and is she familiar with this condition? There are many implications specific to medication management and drugs to be avoided with this disease so it may be a conversation worth having.
Best of luck.

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Marian, daughter of mom [82] diagnosed with LBD November 2013 after 7 years of a textbook course of this disease. Passed on January 26, 2014 following a week of home hospice care.


Sat Aug 09, 2014 9:22 pm
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Joined: Sun Aug 03, 2014 1:35 pm
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Thanks for the replies. I am in agreement that the finances and all other arrangements should be dealt with as soon as possible, but his sister, who is his doctor, has told me to stop looking at Google, has told me to ask his accountant about money dealings, and, well, basically shut me down.

She is very smart and will probably research Lewy Body D, now that I've told her I think that is what he has. I will be certain to intervene if she prescribes ANYTHING for the hallucinations to make certain she understands the issue.

Friends and the Dr. think the two episodes are not conclusive evidence- some think it may be a reaction to his depression meds.

In any case, I will have to wait for a diagnosis that he agrees with in order to do more. or at least it seems that way to me.

Then I guess I had better move fast.
I already have my medical directives done.

Cass

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Prunerwoman


Sat Aug 09, 2014 9:47 pm
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Cassturnbull - Welcome to the forum! I am one of the three moderators here, so let me, Gail or Anne know if you need anything. I am so glad you have found this group. It's a resource I wish I had found before losing my dad to LBD several months ago. Now that I have found it, though, I am grateful to have the ability to help those who are still struggling with this terrible disease.

For many here (and for my family) acceptance of the diagnosis is a very painful process. With the first severe setbacks come additional losses and adjustments. It sounds, though, like you have an ally in your husband's sister - at least it sounds like her heart is in the right place, and her medical background should be a great asset for all of you. I did have to chuckle about your comment that she told you not to Google things. I can't tell you how many times I've heard this from doctors, including a few I work with. However, there have been many times I have "Googled" solutions that doctors (or veterinarians - similar issues) did NOT know about. The world of medicine is continually changing, and those of us most intimately struggling with certain health issues are the most motivated to find the answers that are out there. So... KEEP GOOGLING! : ) And keep reading around in this forum. You can do word searches pretty easily to find discussions related to specific symptoms or meds or other issues you may be struggling with.

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Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.


Sat Aug 09, 2014 9:57 pm
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Joined: Sun Mar 30, 2014 5:11 pm
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Location: Hawaii
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Hello, Cassturnbull, and welcome to the forum! We're glad that you found us. In addition to exploring the forum with its abundance of pertinent topics, please also fully explore the website. I'd also recommend this website to your husband's sister, the MD, as there's a lot of info for medical professionals, including diagnostic criteria.

I agree with Dorthea and others who have mentioned how important it is to take care of legal matters now.
1. Power of Attorney (for finances) A.S.A.P.!
2. Healthcare Power of Attorney ( for health care decisions)
3. Advance Directives, where you need to spell out what measures you and your husband want taken under which circumstances). On this last item re my mother, we just had "DNR" and not much else. We had never even thought of including no feeding tube or ventilator. Fortunately, that wasn't a problem when it came time to needing both; we knew what she would have wanted. That's great that you've already filled out your directives.

Fortunately, he lets you drive. But, if you haven't already, you'd be wise to hide his car keys, just in case he decides to drive while you're at work or out elsewhere.

I understand not wanting to poison what time you have left. But doing these things now involves your husband in his care to grant his wishes as much as is safely and pragmatically possible. Soon enough, he'll forget more things, which sometimes can be a blessing for them.

Regarding the MD sister, please know that non-speciality MDs misdiagnosis or are late in diagnosing LBD all too often. I'm in health care (Chiropractic Physician who worked along side MDs) and never thought to change my mother's care from an Internal Medicine doctor to a GERIATRIC Internal Medicine doctor. If his sister doesn't specialize in Geriatrics (Int. Medicine, Neurology, or Psychiatry), she may miss this diagnosis, simply because this is not her specialty.

You want the right specialist on your team. And Molly is right, continue "Googling" ! Finally, many, if not most doctors do not treat family members for all kinds of good reasons. Let us know how you and your husband are doing. AnneAAA

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Sun Aug 10, 2014 2:10 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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I, too, would like to welcome you to the club nobody ever wanted to join, but that we need/have needed!!! You have been given some good advice by others already, especially the advice about not letting your LO drive, and taking over the finances. These are 2 crucial things that you CAN and need to have some control over to protect you all physically as well as financially.

I am wondering why a family member is his physician, too. Unless you live way far away from any other dr., most drs. won't treat their family members for a variety of reasons. Perhaps time to look for another dr.???

Drs. who suggest that we not read about conditions, diseases, treatments, etc. IMHO are usually insecure about having patients and their families know more about a particular disease than they, perhaps, do. In the defense of some drs., I realize that there are people who are hypochondriacs, where more info. is probably a bad thing, but geez, "forewarned is forearmed" and when you are dealing with the various dementias, the more you know the better you can help your LO in so many ways. Any dr. that would tell me not to read about a condition would be one I'd stop going to immediately. What are they afraid of, is the question I'd ask.

Good luck with all you are dealing with, and come back often. And, BTW, many of our LOs with LBD observed enormous declines, sometimes overnight, so "getting your house in order" can't happen too soon. Lynn

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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 Aug 14, 2014 4:50 pm
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Joined: Sat May 25, 2013 3:53 pm
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Welcome to the forum Prunerwoman. (I can see my trees being cut now :) ) Everyone here has said what needs to be said. You live with your husband and see the nuances his sister won't be able to see. You might also mention the "show time" to her as well. Definitely get her to read the medical info on this site so she's aware of LBD as a possibility. As she is his sister, she may be less inlined to see something she doesn't want to see. I too would wonder about a different doctor - a geriatric neurologist preferably!

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


Fri Aug 15, 2014 11:20 am
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Joined: Tue Apr 29, 2014 4:33 pm
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I had to take my LO to the ER this past Tuesday. He was making stumbling sounds and I called out, Are you falling? in a humorous way. And he said Yes. I immediately jumped up and he was almost staggering; it happened in so short of a time when he was fine, maybe two minutes. I checked his bp which was 94/47, low but not that low for him, but his pulse was 41.I called the Dr's office to check with the nurse but they were all out to lunch. They said to call 911. I called the cardiologist's office; he is on vacation and his nurse said to take him to ER.. I drove him there; when I told the triage nurse that he had Lewy Body, she had never heard of it! In the exam room in the ER, I told the nurse that he had Lewy Body. He had never heard of it! I left him with a handout pamphlet from LBdA and need to request more. I think his sister needs one of these pamphlets! I never saw the doctor until all tests were done - I told him he had Lewy Body; he was foreign so nodded his head so doubt it he knew what it was. After 6 hours we came home - no more ER unless it is something REALLY drastic. I should have recognized it as the downs and ups that occur with this disease. But you do become scared when they are walking around like a drunk. Hang in there - ole Lewy is an up and down ride.


Sat Aug 16, 2014 11:12 am
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Joined: Sat May 25, 2013 3:53 pm
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You never know when something else might go out of wack with the body too - so although it's a trip each time -- it's great you're on top of it!

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


Wed Aug 27, 2014 11:30 am
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