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 New to Forum (Dad has LBD) 
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Joined: Thu Feb 05, 2009 10:18 pm
Posts: 9
Post New to Forum (Dad has LBD)
Hi Everyone, I have been reading your posts for the last few days. It is great to see a forum where people who are going through the same thing, can exchange notes.
My Dad was diagnosed with LBD at age 57, five years ago. He is now 62 and the doctor just said he is progressing. He is divorced and lives alone. I am 28, my sister is 26 and we have a 17 year old brother.
I feel he is the most affected by this...proabably confused too. He is at a difficult age to explain and also for him to share his feelings.
So far, I feel we have been lucky that my Dad hasn't progressed at a faster rate. It is difficult to watch him struggle through tremors, have difficulty with simple tasks such as opening a package or eating with a spoon. He tries to compensate, but to me it is still noticable. He still drives locally, although he is getting to the point where he understands he might not be driving much longer.
Mentally, some days he can talk so easily and other days he struggles to complete a sentence. He loses his train of thought. Typically he can recall an incident that happened years ago, with little to no problem. It is hard to see a person who worked so hard all of his life deteriorate.
He currently is taking Aricept, Celexa, Klonopin and Trazadone. If he forgets his meds, it is quite obvious. He was on Seroquel as I have heard many of you mention, however we did not like the way he was on that so it was discontinued. In the beginning he had terrible hallucinations of wrecks and other horrible things.
I am a Registered Nurse. My background does help to deal with a lot of the issues although it is still very hard. I am grateful that I found this website and have the opportunity to share and receive information with others.
Is anyone else being treated through a VA or is anyone else from the Pittsburgh area?


Fri Feb 06, 2009 4:01 pm
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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ahall1010 --

Glad you found this resource. My husband is being treated by the VA (he is 75), and that's definitely worth looking into if your dad qualifies for health benefits -- the prescription benefits alone have been a godsend! They've just loosened up acceptance into the program, which had been restricted for the past few years. So definitely look into VA. They offer a range of services through their medical program.

I'm concerned about your father driving. If he sometimes has trouble opening a package, he WILL have trouble responding quickly to an unanticipated traffic situation. It is probably time to have "the talk."

Does he have the financial means to move into an independent living or assisted living facility? He would have how own condo or unit, but could avail himself of meals, transportation, possibly medication reminders, etc. as he needs or wants them.

I'm sure others will have some advice as well.

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Renata (and Jerome-in-Heaven)


Fri Feb 06, 2009 4:39 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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ahall1010 -

There are a few people here whose loved ones have been seen at the VA.

With visuospatial impairment, I do wonder why your dad is still driving (or being allowed to drive). Have you asked his MD specifically about this?

Have you considered a medication reminder service or someone who would go by daily to give your dad his meds?

I think David Thomas lives in the Pittsburgh area. He has a blog on LBD. He's a (now-retired) psychiatrist with LBD. See knittingdoc.wordpress.com.

Robin


Fri Feb 06, 2009 5:20 pm
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Joined: Thu Feb 05, 2009 10:18 pm
Posts: 9
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He does not have the hallucinations any longer now that he is on the medication.
Also- we spoke to the MD about this and he had him take the driving exam again...which he passed. So for now he still has his license, however his driving is very limited. He doesn't want to hurt anyone or himself.
How do you get a medication reminder service? I typically call to make sure he has taken them.
I will look into finding David Thomas on the link you provided.
Thank you for the advice!


Fri Feb 06, 2009 5:58 pm
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Joined: Thu Feb 05, 2009 10:18 pm
Posts: 9
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Renata,
Thank you for the advice. He currently does go to a VA hospital. It is hard sometimes though because they have so many different doctors coming and going. Although sometimes we do see the same one.
He is not to the point of assisted living....yet. Although I do agree with the driving issue.
How is your husband doing?


Fri Feb 06, 2009 6:03 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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ahall1010,
Welcome to the lBDA forums I am glad you have found them and as you see useful infomation is here for people to utilize.

My husband was see by VA doctors in Tampa FL and they were wonderful. He seen the same doctors all the time and the med benefits was a life saver for us, they provided walkers, wheelchairs any thing that we needed.

I too am concerned with the driving for your Dad, the same way some days you mention he can talk and other days he can't well it is the same thing for his driving and God forbid an emergency should arise he will become even more confused, but sounds like you are trying to be on top of it!

Yes this is an illness that is tough to watch, and is very hard for a young person such as your younger brother.

Again welcome.

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Irene Selak


Fri Feb 06, 2009 6:31 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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ahall1010,
I think Lifeline offers a medication reminder service. See lifelinesys.com. You could also check with the local chapter of the Alzheimer's Association to see if they have other suggestions. Sometimes they will have relationships with providers (such as Lifeline) so that families can get special rates.
Robin


Fri Feb 06, 2009 6:37 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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ahall1010,
And, do a Search (see the top of this webpage for the Search function) of past posts containing the word VA to find others using the VA. I think Lorraine's husband goes to the VA; Lorraine's username is lbellomy.
Robin


Fri Feb 06, 2009 6:39 pm
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Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
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Glad you found us and these people are all big helps getting through this.

I too am concerned about your dad driving. I am concerned about him, but I am also concerned about the person that he hits, maims or kills. I am sorry about being so harsh but that is the reality. As raffcons says - he WILL have trouble at some point responding, especially in an emergency. I know here in Canada we can call the MVA and they will be the ones that call for the licence if you don't think that he will listen to you. The driving privilege has to be taken away. I took my husband, Henrys away in 2002 and he was a trucker so he missed it but I was not going to take a chance on him hitting an adult or God forbid a child, nevermind what he could do to himself. It's not worth it to let him continue to drive.


Sat Feb 07, 2009 1:10 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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In California at least there are special booths -- remember DriversEd class -- that someone can get in to and it tests reaction time, etc. You might ask the MD if there's such a thing in PA.


Sat Feb 07, 2009 2:49 am
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Joined: Fri Feb 29, 2008 7:02 am
Posts: 537
Location: MI
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We managed to lose Mother's license- told her she'd have tp pass the written test to get a new one. After a year and a half she still drags out the book to study and I'll quiz her. Thankfully she doesn't have enough of an attention span to get very far.
Sharon

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syt


Sat Feb 07, 2009 9:23 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Sharon,

I haven't heard of the "lost license" idea. That's a good one!

In our local group, an LBDer's license expired and he went to the DMV to take the test to get a new one. He got 5 questions wrong. I think the limit is 3 questions wrong. The examiner passed him anyway! The wife was very upset. She has had the MD talk to him a few times.

Robin


Sat Feb 07, 2009 2:39 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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SYT...good method. By all means, to all who have LOs who are still driving....DON'T LET THEM DRIVE! They could kill a child or worse yet an entire family. I was lucky that my LO gave up driving quite easily. He was hallucinating while driving, seeing things in the road, swerving to avoid them. At that point he knew it was the right thing to do. He really hates that he cannot drive but knows he just cannot...for his own protection and that of others.

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Dianne C.


Sat Feb 07, 2009 2:48 pm
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Joined: Sat Sep 22, 2007 5:53 pm
Posts: 90
Location: Texas
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My husband goes to the VA in Dallas, TX. I am like the others about the prescriptions. That is sure saving us some money. I was disappointed the last visit to the neurology department because we got a resident and I felt like we just went backward giving her his history. In March we will see the same neuropsychologist as before. That will give us some continuity of one doctor. Renata, I think Jerome gets his aricept through the VA, right? I was told that my husband is approved but so far no aricept. (I get it a the local pharmacy) Oh, well, I will try again in March.
Lorraine


Sat Feb 07, 2009 4:35 pm
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Joined: Sat Dec 13, 2008 12:52 am
Posts: 118
Location: BC, Canada
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Henry gave his licence up fairly easily too - we did not cancel, I just took it from him and we have since used it for ID. When it came time to renew his licence plates for his truck I just didn't renew them and when my car came up for renewal I renewed them but told him that he was not allowed to drive my car. It worked so far but if he ever demands that he gets his licence back for driving purposes that will be the day that it goes in the shredder. He now knows though that he can't drive because of seeing 'things'.


Sat Feb 07, 2009 4:51 pm
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