Took my 88 yr. old dad to the neurologist today. Dr. doesn't think my dad has Parkinson's or necessarily LBD (but maybe). He admits he doesn't know a lot about LBD (guess who's going to receive lots of LBD stuff in the mail next week???!!!) He says my dad has a lot of stuff going on, and he thinks: spastic paraparesis, corticobasal degeneration, ventricular asymmetry, and his kidney disease (which we knew about since last year) has advanced to stage 3. He said also he might be developing ALS.
Wow - now what? I could spend 24/7 researching all this stuff now. Help! I'm trying to figure out what these things are, how they might relate to each other (or not).
He doesn't want to put my dad on any meds that might "help" his muscle issues because they are too risky if he DOES have LBD and he is already on a ton of stuff. He does want to do an MRI to see if my dad's upper spine has degenerated causing the nerve issues that have made his arms almost useless. My dad says "no more MRIs" especially if there is nothing that can be done to make him any better. Being into Slow Medicine myself, I agree with him and so does my sister. We don't want him to be all stressed going to the hosp. and having another MRI just so the doctor can satisfy his own curiosity.
Anyway, I have lots of research to do! Any of you know about any of these diagnoses, like how they might relate to LBD? Thanks, Lynn

CBD is a disorder I know quite well. It's one of the four disorders in the local support group. CBD, LBD, PSP, and MSA are often confused for each other. (Again, the only way to get a confirmed diagnosis is upon brain autopsy. Arrangements for that need to be made in advance.)

For general info on CBD, go here: psp.org. I think this website has copied some brief NIH info on CBD. But it's probably sufficient for you right now.

CBDers have ideomotor apraxia. Many have one limb (hand or arm, usually) that is useless. (Often the uselessness encompasses the limbs on both sides.) Some have alien limb syndrome. The dementia of CBD is quite different from that of LBD. The eye movement issues in CBD are also different from LBD.

Oh, Lynn! How confusing to have all of these diagnoses flung at you like that. Robin probably knows quite a bit about CBD--I know very little except many of the symptoms are a lot like PD, LBD and PSP! My husband has nearly all of the symptoms of MSA but MSA doesn't cause dementia or hallucinations, so he doesn't have it, I guess. In my uneducated opinion, it's a crap shoot. The main thing is that your dad is better on the Aricept & Namenda. I agree with you about not having any diagnostic procedures if the outcome doesn't lead to any new, effective treatment.

ALS would be really awful--especially if he also has dementia. What a miserable way to die!

I posted elsewhere here that one person I know of had a clinical DX of LBD, and a path-confirmed DX of PSP. Another person about a year ago also had a clinical DX of LBD, and a path-confirmed DX of CBD. Very seldom does the LBD diagnosis stick through brain autopsy.

A good book written by someone whose husband had path-confirmed CBD is "Finding Meaning with Charles" by Janet Edmunson.

PSP and CBD are very similar. Here's another person who used to be a member here; her father's diagnosis changed from LBD to PSP:

http://community.lbda.org/forum/viewtopic.php?t=832

Thanks for all the info. and support. Right now he has 3 limbs that are 99% useless and his right arm is not far behind. 6 weeks ago he was functioning enough to sort of feed himself. Yesterday he struggled to pick up a hot dog with his right hand. His left hand sits in his lap and when I ask him to try using it to help his right hand he will move it, but he has to be reminded to use it. His right hand shakes when he picks up his glass to drink, but the neuro says he's never seen any tremors, thus on that one symptom he doesn't think he has Parkinson's. The ALF is going to have people feed him. I think we are weeks away from being asked to move him to a NH.

Tremor is not a required symptom for PD.

That's right. My husband was diagnosed with PD in 2005 and has never had a tremor.

Interesting - that was what I had read when I've read lists of Parkinson's symptoms in various places. Of course, far be it from me to try to "correct" the neuro. but I am going to send him a list of Parkinson's symptoms from Mayo or Hopkins or somewhere and check off those my dad has as a little "reminder" that he doesn't HAVE to have tremors. But he does have them sometimes - the dr. just hasn't seen it!

The list is not long for the PD diagnostic criteria. It's tremor, rigidity, and bradykinesia. You have to have 2 of the 3 to get a PD diagnosis.

One strong indicator of whether your dad has PD (or LBD) and not CBD is whether your dad was/is responsive to levodopa.

His dr. refuses to prescribe levodopa or any similar drugs. He said they might kill him or make him a lot worse and he doesn't want to take the chance. Your opinion?

There's no point to giving your father Sinemet now if the goal is to see if he's levodopa-responsive or not. The only point to give Sinemet now would be if you are dealing with extreme rigidity but there are plenty of other meds to give if that's the symptom you are dealing with.

My husband takes Stalevo, which is carbidopa, levodopa & entacapone. He has been on it for over five years and it keeps him mobile. Every time we try to cut down his dosage, the effect is apparent. His first neurologist made his PD dx based mostly upon his dramatic response to Stalevo, which improved his mobility [there was no tremor]. Although my husband also had dementia at the time, he wasn't dx'd with LBD until later.

I have read that some LBD is not responsive to Levodopa, however.

Lynn,
Wow so much to deal with, sounds like you have been given direction here, I am so sorry you all are dealing with this confusion in your Dad's DX. When are you going home? Will you be making arrangements for your Dad to be nearer to you? So many things to think about!!

mockturtle,
You saw the FDA alert about Stalevo and prostate cancer?
Robin