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 Eric and Irene....thanks 
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Joined: Sat Apr 07, 2007 1:56 pm
Posts: 54
Location: Florida
Post Eric and Irene....thanks
Eric and Irene........

Thank you once again for your responses. We were out ALL day today. My husband had p.t. late morning and then we went out for lunch. He loves going out to eat and, thankfully, has a marvelous appetite. Then we went to the doctor so he could have a T.B. test as required by the Memory & Wellness Center for his enrollment in their Parkinson's
Outreach Program. I look forward to his joining this program so that he can be with other people who share similar problems, and also get the physical exercise and brain stimulation exercises the program offers. The program only has another 8 or 9 weeks to go as they've only been funded for 12 weeks, but they're hopeful to get funding for another 12 weeks. He'll be going twice a week, 4 hours each time, and lunch is included.

Eric, to answer your question about his incontinence problem, he was on Avodart for 8 months (no help); he was on Enablex for 3 weeks (no help), and he was on Detrol LA for 2 months (no help). His urologist ran every test possible, the latest being a urodynamics test. Conclusion: bladder control lost due to Parkinson's. With respect to “full lucidity”, the thought process is fine at those times, but he’s quiet, uncommunicative, lacks alertness, is somewhat morose, and his face is expressionless (the PD mask). On the good days he’ll pick up the newspaper or magazine and read them. He watches a lot of TV (mostly CNN) and I’m hoping to curtail that quite a bit by getting him involved in some of these programs. He is able to tell me what’s happening in the news when I pop into the living room and ask him what they’re talking about on the TV.

Irene, actually I’m not sure which came first, the chicken or the egg. I tend to think the motor problems came before the cognitive ones, but knowing very little about these disorders at the time, let alone ever dreaming his formerly active mind could ever slow down, I wasn’t on the lookout for telltale signs. The neuro put him on Sinemet a full 1-1/2 years before he was started on Aricept, so I’m assuming the motor problems came first. Who knows. As Eric said, the same meds are used in all these disorders.

As for his REM disturbances, he’s been taking Benadryl at bedtime. The neuro gave him the ok to do so even though there’s some advice to the contrary about it. He hasn’t shown the REM disturbances as frequently since taking Benadryl, so when we see the neuro at the next appt., I will ask about the Klonopin. I remember being given Klonopin when I was in the hospital for some minor surgery a couple of years ago.

By the way, I do notice one thing about his awareness improves significantly at night. He’s totally fuzzy throughout the entire morning, gets better as the day wears on, and is best at night.

I’m glad I found you all......you will be great support for me..

_________________
Marilyn


Fri Apr 13, 2007 9:02 pm
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Post Re: Eric and Irene....thanks
Hi Marilyn,
Which meds he was put on first really doesn't mean a lot only because if the cognitive was extremely mild it might not have been picked up on at the time, My Husband also started on the PD meds first only because the motor issues were more problematic at the time and I knowing my Husband's Mother had AD I just assumed thats what we would deal with never dreaming of something like LBD but as time went by I knew with a DX of PD there had to be more to it , by this time the behavior issues reared their ugly heads and I knew this was not typical PD, but none of it matters when you are caring for someone with one of these illnesses :!:

PS. We are glad you found us too! If interested there is a wonderful Caring spouses support group online, if you are let me know.

Marilyn wrote:
Eric and Irene........

Irene, actually I’m not sure which came first, the chicken or the egg. I tend to think the motor problems came before the cognitive ones, but knowing very little about these disorders at the time, let alone ever dreaming his formerly active mind could ever slow down, I wasn’t on the lookout for telltale signs. The neuro put him on Sinemet a full 1-1/2 years before he was started on Aricept, so I’m assuming the motor problems came first. Who knows. As Eric said, the same meds are used in all these disorders.

I’m glad I found you all......you will be great support for me..


Fri Apr 13, 2007 10:02 pm

Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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I think the consensus is that because the acetylcholine deficit is what's driving the LBD, anything with an anticholinergic action, including sedating antihistamines, tricyclic antidepressants and the urinary antispasmodics are going to be Bad Juju.

There's a non-drug treatment for the incontinence called URGENT-PC that works well for some people. It's safe in PD/LBD and well-tolerated....it's very similar to an acupuncture technique that has been used; Cal got pretty good results from it - at least as good as with Ditropan, but without the cognitive side f/x. Worth looking into.

We saw the same thing with Cal - that he was *VERY* slow to get started - started perking up about 1:00, but was fading again by 4:00. I would definitely ask the neuro about psychostimulants as an option. There's information about them around page 17 in the document at:

http://www.lewybodydementia.org/Boevelink.php

The use of these is somewhat uncommon and somewhat unconventional, but we've had *GREAT* luck with them - from utterly flat and unengaged and sleeping all the time, to planning summer BBQs. I think it's the most successful piece of Cal's treatment strategy.


Glad to hear you've found some adult day / therapy activities. They're definitely useful. Water exercise is also known as being good for people with PD syndromes.

Eric
(edited to add info about the stimulants - I thought I'd mentioned them in the first thread)

_________________
Cal is not the real name of a real 84 year old with DLB. I don't speak for LBDA, nor do I have clever initials behind my name, so information is provided without warranty. Caveat everybody. I blog at http://PragmaticCaregiver.blogspot.com


Sat Apr 14, 2007 3:28 am
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Joined: Sat Apr 07, 2007 1:56 pm
Posts: 54
Location: Florida
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Eric.......

Your knowledge about LBD and like disorders is astounding. Are you absolutely certain you're not a doctor????

I'm not at all happy with his taking Benadryl every night before bed and although the doctor said "ok", I knew he wasn't thrilled with it either, and we need to find a better answer because part of his morning "fuzziness" is probably due to the Benadryl. Actually, I don't think he needs anything to fall asleep, but it's clear that he's addicted and refuses to go to bed without the Benadryl. I think if the doctor gave him "sugar pills" and told him it was a new sleep medication, my husband would gladly switch to those and probably fall asleep just fine. However, he may indeed need something to "quiet" his REM sleep behavior and the Benadryl does seem to be helping somewhat with that problem. But, I intend to thoroughly discuss this with the neuro at our next appt. and the possible use of Klonopin or similar sleep med. I should add that my husband CANNOT take sleep aids like Ambien or Lunesta. The hallucinations they induce in him are amazing.....not horrific, and in fact quite comical, but even though he is technically asleep, I'm kept awake all night as he sits up in bed and babbles to me about nonsense. Hallucinating is one of the top listed side effects for these sleep meds for the general public, not just people with neurological disorders. So, those are off limits to him.

Also, he dozes off a lot after breakfast even though he's had a full 8-9 hours sleep during the night, but part of that may be due to lack of activity. Frankly, if all I ever did was sit in a recliner in front of the TV, I'd probably doze off a lot myself. Hopefully, getting him involved in new programs will help. He even tells me how bored he is at times. He did take Provigil for a while, but the results were not significant enough to warrant the huge price tag ($800+ for a 90 day supply). However, I understand it's coming off patent, so I will look into it again if need be.

As for the "Urgent-PC", WOW! That seems rather drastic. My husband's urologist is one of the most terrific doctors I've ever met, as is the neurologist, and he has taken very special care of my husband since we moved down to FL. After months and months of taking Avodart and then Detrol LA, both failed to help. Knowing that Enablex was contraindicated for PD (which is what we thought my husband had), the urologist gave him samples for only 3 weeks to see if there was any positive effect, and there was none. At our last appt. when we were told that all testing indicated the neurological disorder was the absolute culprit for his bladder control loss, I asked the doctor if there were any options left to help the incontinence. He told us that nothing short of surgery would help and that a great percentage of surgical outcomes were unsuccessful. He added that he wouldn't even attempt such surgery on my husband because the risks far outweigh an uncertain outcome. Basically, he told us to learn to live with the external condom-catheter and so that's what we're doing. Although my husband has given in to using it, he despises it although it comes in very handy when we're out of the house and he doesn't have to continually go to the restroom. The doctor never mentioned this Urgent-PC, but I will ask about it at the next appt.

One more thing I wanted to mention.....my husband is profoundly hard of hearing, almost deaf, and wears a hearing aid in each ear. His lack of alertness and sometimes blank stare when you speak to him are in part due to the hearing problem. In a quiet room, on a one to one basis, he can hear well enough to intelligently converse, but I know that's only part of the problem. The recent memory/cognitive testing he just had done took the hearing problem into account, and he still did poorly.

I know I promised "short" posts, and I've gone back on my word here. Sorry, but no doubt things will get better as time goes on.

_________________
Marilyn


Sat Apr 14, 2007 12:26 pm
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