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Topic pd vs lewy body disease Go to previous topic Go to next topic Go to higher level

By pdspouseagain On 2011.06.22 16:11
my pd husband and myself have been down a nightmare road the last 3 months. he's had pd 10 yrs, the muscle rigidity kind , no tremors. Has been on Levadopa, then Stalevo, and Mirapex a long time, very dependent on them now. infrequent hallucinations have become more and more regular last 1-2yrs. original neurologist took him off Mirapex, he couldn't walk, fell in bathroom and i had to call fire department to get him up, became incontinent at night, etc. although mental problems were greatly decreased. Went on Seroquel for hallucinations, works somewhat. had bladder infection, antibiotics cleared that up.Went to movement disorder specialist, he has decided he doesn't have PD, it's diffuse Lewy body disease, told us to go off Mirapex again. tried for 3 days, disaster. this guy says people without tremors don't really have pd. His office called us to join a study of new pd psychosis drug, got there and were rejected because his chart said he doesn't have pd, I demanded to see his doc, we waited 3 hrs, then were told he went to lunch instead. Needless to say, took his records and left, will go back to original neurologist as stop gap. Does anyone know the best docs or places to go in the socal/la/oc area of California? UCLA, USC? private doc? Can anyone tell me about pd vs Lewy body disease vs Parkinsonism vs whatever? our lives are being shattered by this, know everybody else has a tough time too and wish all the pd-ers and care givers well. Thanks

By caregivermary On 2011.06.22 16:57
pdspouse

the simple explanation I have found is the following.
if dementia symptoms come before the movement problems, then it is most likely
Lewy Body dementia. if the movement, rigidity problems come first and dementia
later on, then it is Parkinson's with (lewy body) Dementia.
Lewy bodies are found in limited brain areas in typical Parkinson's disease. In diffuse Lewy Body dementia lewy bodies are more widespread in the brain. Lewy Body dementia progession is must faster than typical PD-usually 5-7years. I understand Parkinsonism has the appearance of PD but is not PD. Some drugs will cause Parkinsonism. Lewy Body dementia will usually have Parkinsonism later in the process. I believe a good Movement Disorder Neurologist would be able to make this determination.

Your husb's course sounds very similar to my husbs. he was Dx 21 years ago and 10yrs ago he started falling and had a lot of trouble walking. At first he was DX with lower spine and cervical spine issues which resulted in surgery. He was taking levadopa, stalevo, mirapex and amantadine. Removing mirapex overnight is a problem. It must be removed over a long period to allow the system to adjust. My husb has had problems with incontinece for the last 10 years. He has been taking Seroquel for 3 yrs and his hallucinations really calmed down.

I lived in So Cal and understand USC would be a good place to go for PD. My husb was Dx at the Parkinson's Institute in Sunnyvale Cal(no cal)

I know from experience that this is a tough time for you both. I believe a movement disorder specialist at USC should be able to give you a comfirmation on the PD and get the meds straighten out. You are your husb's advocate-keep pushing for answers.

Good luck

By LOHENGR1N On 2011.06.22 19:53
Just a note to clarify; Parkinson's Disease is by definition, idiopathic or has no know cause. Parkinsonism has a suspected cause wether head injury, toxin or other cause. That's the difference. A cause verses unknown cause. Lewy bodies are present in Parkinson's Disease. Lewy bodies found in other parts of the brain are the culprits of lewy body dementia. Diffuse lewy body disease would be that lewy bodies are spread throughout the brain and not in one area as would be found in lewy body dementia or Parkinson's. I would think what you're asking about will fall under the umbrella of a Parkinson's Plus disease. I hope this helps clarify the jargon these Doctors use. Please keep us posted. Take care, best of luck and hang in there.

By pdspouseagain On 2011.06.23 14:19
thank you, lohengrin and mary for taking the time to respond. it helps to know you're not alone, especially when hallucinations start taking over the person you love. Wish you both well

By karolinakitty On 2011.06.23 21:25
My guy has been put under the LBD label from the get-go with his movement doc. He says he is under the umbrella of all the PD+ diseases, labeled LBD for insurance purposes.... the dementia, stiffness and rigidity were the first signs, then came the tremors more so over the last year.
According to our movement doc, those with LBD and some other PD+ diseases do not react to the traditional levadopa/carbidopa drugs and has been on requip since DX over 3 years now, he is only 54. He has none of the "major" bad side effects, just the usual, dizziness and nausea..
If you go to the Mayo clinics website they have a very good definition of the PD+ plus diseases....


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