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Topic PD, dementia or something else? Go to previous topic Go to next topic Go to higher level

By PD Daughter On 2012.08.07 16:11
Hi! I'm new here, but not to the world of Parkinsons. My dad was diagnosed about 8 years ago (now 62) after several doctors oscillating between Parkinsons, Lewy Body, and pseudo-dementia/parkinsons. He does have a lot of motor problems but my family and I have always wondered about his other symptoms. For example, carbodopa/levodopa has never really done anything for him. And if he takes the amount that the dr prescribed, he is practically incapacitated - sleeps, slurs speech, can't think, can barely move. So my mom spaces it out throughout the day which seems to help. Lately it also appears that he has lost the knowledge to do simple things. For example, he doesn't know how to get out of a chair (you can talk him through it - i.e. slide feet back, put your nose over your knees etc). This morning he spent over 2 hours trying to put his shorts on. On the phone, he told me they were "tangled". Basically, he recognizes that he can't do these things, and wonders why. It's not a mobility issue, seems more cognitive. He doesn't have any other memory problems, confusion or hallucinations.

Has anyone else experienced these problems? We try to make him do things on his own, but I don't want to humiliate him if he truly cannot do something. On the other hand, even before Parkinsons, he is the type of person who expects things to be done for him (a result of lots of codling from my mom and his mother).


By seawench On 2012.08.07 18:41
could be a pd plus like MSA. That's what my hubby has


By susger8 On 2012.08.08 10:10
People with PD often have trouble working through a series of steps to get to a goal. It was something that happened to my father. I couldn't just tell him "Please get in the car now" -- I had to coach him to walk around the door, let me open it, walk closer to the door, hold the hand grip, put his foot in, etc. He could do each step individually, but not all together. I don't know why this happens, but it often does.


By parkinit On 2012.08.08 11:17
I agree with sea wench - if the PD meds don't help, then it very likely could be something else...

By lurkingforacure On 2012.08.08 11:39
I hope everyone knows that PD meds do not help many with "PD" but yet they don't know what else to give.

Also, many people dx'd with PD are found, on autopsy, not to even have the hallmarks of the disease (lewy bodies). I have read the misdiagnosis of PD can be as high as 1/3 of cases, although if you go to an MDS the odds of being misdianosed are probably pretty slim.

I know of one lady who is 54 and been on PD meds since she was 27. She recently had the new DAT scan which can see much more inside the living brain and it turns out she doesn't have PD, just low dopamine levels. They cannot tell her why she has low dopamine levels, no idea. The DAT scan can show dopamine levels like the PET scan but also can show other things like whether you have lost cells in the substantia nigra which is classic PD. She did not have cell loss. Needless to say, she is beyond upset and is slowly trying to get off the PD meds which is extremely difficult and can be fatal.

I know most here probably have PD, I wish we didn't heaven knows. I just wanted to share that many do not get that much benefit from PD meds, whether they really have PD or not.

By PD Daughter On 2012.08.14 09:10
Thank you for all of your replies! PD is so frustrating...I can't imagine how my dad must feel. There are so many times when we doubt whether it is truly PD or something else. However, the treatment (if there is one) for movement disorders is mostly the same no matter what type you have. Just trying to manage the symptoms.

Thanks again!

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