My husband is 61yrs old (I'm almost 60) and he has had symptoms for over 2yrs. In August, a NeuroPhysic told us after a full day of testing that he has PSP but the last 2 Neuros that he has seen think that it may be LBD and not PSP. His Psycologist sp? said don't worry about a diagnose just take care of each day as they come.
He goes to the VA in Birmingham, Al. They have really been good to us. Thank God. we don't have to pay for pop's meds. He is on 14 meds.
I call my husband pop because that's what the g'children call him. We have 5 g'babies and have been married 42yrs. pop is a Viet Nam vet.
pop falls many times a day and will not use a wheelchair. The VA gave him a chair and put a ramp. He says that he will just stay home instead of using a wheelchair. pop has been more affected mentally but he has also really been affected physically.
pop hasn't driven in over 2yrs and the VA says that if he can't drive a car, then he can't drive a motorized chair. We went to the VA this morning and the Neuro is trying again to get him a motorized chair.
pop has been showing symptoms now that I look back for over 2 and an half years. He has had hand tremors for about 4 or 5 years and takes Primodone to control them. He takes Seroquel to help control outburst and this morning the Neuro raised his dose to 100mg a day and some extra for him to take when he goes out in the public. I've told him that he's gonna get us both whipped with his loud commits and outburst! About a year ago, he had such vivid dreams, that were real to him.
We have 3 grown children. The girls are 33 and 35 and our son will be 27 Sunday and he still lives at home. He is a great help to me now. I go to a Dementia Caregivers Support group that meets once a month. I've really been thru a bad depression having to deal with pop. We had custody of g'sons 11 and 13yrs old and I had to give them back to our daughter because they didn't need to see pop go down hill. They have mental problems from abuse and pop couldn't handle them living here anymore,
I've gotten long winded!
I've got alot of reading to do
I guess that I'll be going to this board and the PSP board.
nanny

Hi Nanny,

I recognize you from the PSP Forum just based upon the first two sentences! I'm glad you've made it over here. Certainly LBD fits many more of your husband's symptoms -- the fluctuating cognition, angry outbursts, personality changes, delusions, and hallucinations.

Do you want your husband to have a motorized chair? Does your husband want to have a motorized chair? Sounds dangerous to me.

Was the antipsychotic recently changed because I thought your husband was taking Zyprexa? I remembered because not many people are prescribed this particular antipsychotic. (Seroquel is much more common.)

Glad to hear you've joined a dementia caregivers support group. Is your son getting some support as well?

I do think when dealing with LBD a correct diagnosis is important. It's not as important if LBD is not part of the possible diagnoses. You had said on the PSP Forum that one neurologist thought your husband had concurrent MSA and PSP; I indicated that this combination doesn't occur. If the choice were between PSP and MSA, the treatment would be the same. But as soon as you add in LBD as a possibility, the treatment becomes very different. So I would give a gold star to whomever said LBD as a possibility. (On the PSP Forum it seemed like it was the neuropsychologist who thought it was either PSP or LBD.)

Take care,
Robin

Nanny,
When my father-in-law passed away, he got his father's motorized chair. It is just sitting here and getting no use at all. He got on it a couple of times and also tried a motorized cart at the wheelchair. He could not handle any of them. This is just my 2 cents worth.
Lorraine

Hello Robin It's me! pop has gotten more ill-tempered and stays angry now. He used to take Zyprexa for depression but it was stopped over 2 years ago when they thought that pop had TD from the Zyprexa. The NeuroPhysic said that he thought that it was either PSP, LBD or MSA. After studying the results of the testing, he said that he thought that it was PSP. pop has seen 2 different Neuro the last two appointments and they both said that they think that it is LBD.
pop refuses to use the wheelchair because he can't stand to see me have to load and unload the chair and me push him around. pop's PCP said that they make a motorized chair that has controls on the front and the back. That way I could drive it and not have to push it. He has had both shoulders reworked twice each and can't push the chair himself.
We got paper work from the VA yesterday to apply for them to redo one of our bathrooms and put a walk in shower for pop.
nanny

Nanny --
How complicated or difficult is the process of getting the VA to approve the bathroom and walk-in shower work? Can you give me the URL for the details on that program? Thanks!

Here's a link

http://www.prosthetics.va.gov/HISA.asp

I haven't done the paperwork yet but you have to get 3 estimates. pop's PCP sent orders that he needs the walk in shower.
I'll let you know how it goes when I apply.
nanny

Welcome. I am very sorry to hear about your husband. I am also new to the forum. If you read a few posts down, you will see mine. My Dad is diagnosed with LBD. We also go to a VA hospital (he is a Vietnam Vet as well).
I am 28yrs old (not much older than your son). I know how hard it can be. I am basically the primary care giver for my father....although his significant other helps as well and I have a sister too.
I wish you luck with everything. I think the forum is wonderful. I can read about other experiences with LBD. Most people I encounter daily do not even know what it is.

Re: diagnosis
We had a seminar a week ago on atypical parkinsonism. The neurologist guest speaker said that it's been her experience that people are simply not satisfied until they get a diagnosis of a specific disorder. They are not satisifed by a diagnosis of "parkinsonism" or "atypical parkinsonism." She said that people would rather be told "you have ABC disorder," and then a year later told "you have XYZ disorder." When people have a specific name to the disorder, they are ready to fight. Until they have this, they are in limbo.
Robin