For those who care for someone with Parkinson's disease
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By VioletV On 2015.08.25 00:54
I am in need of your wisdom, as my husband's PD appears to be moving into a new phase. [I will be sending a confidential email to his new PD provider to address this, but I want to know how and whether to bring up with my husband himself the fact that he is beginning to slip cognitively.] His OT, who knows him well, agrees that she is seeing these changes.

A couple of examples: we were planning a call today and he asked me about the timing of a call to England (but the call is within the US). We are currently on a mini-vacation and he began talking about how he enjoys the landscape in Ghana -- was surprised when I said, no, we are in the States. At dinner tonight asked me about the band that was playing at breakfast --- there was no music in the restaurant, either live or recorded. When watching TV, films or even live theater he finds himself so drawn in that he can't distinguish whether what he heard/experienced was real or not. Has asked me "am I alive?" And though right now we are in an unfamiliar hotel, these things have also happened in our own house.

Scary to write all of this in one place.

So yes, the reality is that these things are happening. He has said to me, several times over the last few weeks, "I feel as if my mind is not functioning." And I have deflected the conversation. But am I wrong to do so? How do we talk about this? What have you done? What do you wish you had or had not done?


By lurkingforacure On 2015.08.25 22:47
I will be interested to hear what others have to say on this. My concern would be how to prevent someone from withdrawing and giving up if they feel they are losing grips cognitively....yet you have to protect them from hurting themselves as well as protect others from them (driving, in particular, there are lots of posts here about that).

This is such a difficult topic and certainly not limited to PD, as I read just the other day that the rates of dementia are going to explode in the coming years.

By LOHENGR1N On 2015.08.26 00:41
Violet, I hate to sound like a broken record about cognitive decline verses delerium from meds. Do you notice him decline more after doses of medication? Does his confusion come and go during the day? Is there any pattern to this. Look up each of his meds not only for side-effects but also the duration and peaking of medication. By this I mean some extended release will build or take a couple hours to reach maximum levels, peak for an hour or two then decline levels over the next few hours. Does this correspond with when he is most confused? I know it is a lot of stuff to look up and keep track of for a couple weeks but it just maybe something that can be adjusted and help him be less confused and able to function better. Good luck, take care and hang in there

By VioletV On 2015.08.26 11:30
Al, good suggestions. I'll start to track timing, relationship to sleep, meds etc. He only takes Sinemet, still exercises regularly, is sleeping better than in quite a while.

Not broken record, (and do kids these days even understand what that means?). Just helpful.

We're vacationing (in your neck of the woods?) in the Berkshires, seeing VanGogh paintings in real life -- a treat. Back to the PWP stuff and life at home on Friday.


By LOHENGR1N On 2015.08.26 11:57
Yes, I'm in Adams, where are you viewing the Van Gogh's? Williamstown?

By VioletV On 2015.08.26 22:10
We saw the Van Gogh AND the Whistler's Mother at the Clarke in Williamstown.

The Van Gogh images and style are so familiar (as is the Whistler) but seeing them in real life is a totally new experience. Who knew that Study in Black and Grey (the real name of Whistler's Mother) was such a big canvas?

By michele On 2015.08.26 22:52
I am no expert on this. But my father, who recently turned 85, has dementia. And as we research it we are finding out that there are many different kinds. With my Dad there were actually signs of this before his PD diagnosis. But they were so vague and scattered that only now with research and hindsight do we recognize this. Anyway I won't drag out his issues I just want to say that if it is dementia and not infection or medications then you need a diagnosis. Although like PD it is degenerative there are ways to slow the progression down and things you can do to help the person. I suggest talking with him and his doctors and have a game plan. Knowledge going forward will help. Just my opinion not sure it's correct. Wishing you the best!

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