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Joined: Sat Jun 18, 2011 9:53 pm
Posts: 17
Location: Costa Mesa, CA
Post update
It's been awhile since I've been on a forum or gone to a support meeting... But things have settled down and are actually going pretty well. My dad had been in an independent senior living complex and was not thriving - he was there for 2 years and I should have moved him a year into that (I now realize)! In late August, we moved him to a 6-person board and care home environment AND started him on Exelon and the change has been incredible. He is interacting with the staff and his housemates and initially perked and sharpened up amazingly on the Exelon - like reminding me I was trying to get him the flu shot a second time in the same month and asking if my yellowing palm was due to lack of fertilizer! :)

Prior to this move, I had been running over to his place multiple times a day and worrying that he was stuck on the floor and generally fretting constantly about him. This new place is such a relief and he has embraced the community atmosphere despite some cultural differences with the caretakers.

We are now 16 sessions into 8 weeks of prostate cancer radiation and he is holding up pretty well tho his energy before/after has remained low. He will have cataracts surgery as soon as he is ready after the radiation.

He is wearing his watch now (!) and has taken more of an interest in himself and the world around him - I think it's a combo of the social change and the patch! He is still confused at times and forgets some things but overall is a notch up from where he was and I am so thankful for a bit more quality time with him.

Jenna - daughter of Dad diagnosed in 2010 with PD and in 2011 with probable LBD. Symptoms were present for a few years prior. Dad is 74.

Wed Oct 26, 2011 9:17 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: update
I am so glad you are having this better quality time with him, too!

I think your story is a good reminder that while dementia can't be cured, it is very worthwhile to pursue improvements to life quality. They don't always have as big of an impact as they have for your dad (and my husband), and it is sad and frustrating to try one thing after another without success, but it is wonderful when the effort pays off.

I'd like to hear about your dad's progress, if you can take a little time to update us now and then.

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Thu Oct 27, 2011 12:24 am

Joined: Sat Jun 18, 2011 9:53 pm
Posts: 17
Location: Costa Mesa, CA
Post Re: update
Several factors are involved, I believe - inc. switching his antidepressant (paxil) from AM to PM. He hadn't really been talking much and was sleeping ALL of the time. He was having accidents and sitting in it... He was falling daily or even multiple times daily. There was no forward thinking - just comments and thoughts on food, TV and sleep. He was very confused and cloudy.

Currently, he is wearing his watch (! - hadn't worn it for 2 years) and bugging me about replacing the watch band (!). He is using his pedal exerciser several times a week. He has a female friend/housemate for whom he asked me to buy cookies (and then told me she was diabetic! LOL). He is socializing at the dinner table. He even planned a week ahead and consulted me about a restaurant to choose for their weekend lunch outing (<that was huge for me!). I invited him over for dinner and he razzed me about bringing home take out vs home-cooking a full meal (<he taught me how to cook, interestingly).

He, at one point months ago, alerted me to the 'one-celled organisms' living under his (dirty) fingernail - but the general and more frequent hallucinations have subsided like the woman sitting on the couch or the bedbugs.... His cataracts, I'm starting to think, may have contributed so some of the mis-interpreted hallucinations tho they may be also due to the disease....

He still picks his nose and inspects the findings ... he's done that since he moved down here but it may be due to the Flomax causing runny nose.... And he is picking at a bump on his face a lot but I do that, so who knows about that one...

A lot of 'little' things have perked up.... He still has his moments - like it seemed he forgot to get out of the car the other day when we got home. He said something bizarre the other day but then said he realized that didn't make sense... so there was an awareness there. He also razzed me for wearing the same pants twice in one week... Oh and he is taking interest and responsibility in changing his undergarments now!! His caretakers came up with an ingenious solution to constantly changing pullups - they line a pullup with a pad and just change the pads until the under pullup needs changing.

Oh, and we just weaned him off Sinemet - WITH NO CHANGE - so it seems he is parkinsonism vs formal parkinsons :( . We meet his neuro on Nov 3 and I suspect she will not reinstate it. She has also mentioned adding Namenda and may do that when we see her next. The staff at his place think he is better without the Sinemet but I just don't see that much change.... He is walking better but I think that is mostly due to more exercise in general.

Jenna - daughter of Dad diagnosed in 2010 with PD and in 2011 with probable LBD. Symptoms were present for a few years prior. Dad is 74.

Thu Oct 27, 2011 2:39 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: update
What great news about your dad! I'm glad he's able to keep you on your toes with his good memory and clever remarks. He sounds like a sweet guy.

Thu Oct 27, 2011 10:32 pm

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: update
I am so happy for you, Jenna!!
My husband responded well to Exelon patch just like your dad. And when Namenda was added about a year later, there was even more improvement! Sinemet made him less strong cognitively, so maybe being without Sinemet is helping your dad that way as well.
Like Jeanne says, it is wonderful when things we try do work out!
Thanks for sharing.

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Thu Oct 27, 2011 10:56 pm
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