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 Pain complaints 
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Pain complaints
I noticed as the ataxia was developing in my dad, the symptoms were falling into chairs, falling into bed, inability to navigate in bed (rolling over, moving around), inability to get himself properly cleaned in the bathroom, dressing issues, especially shoes and socks. You may want to keep an eye out for these things happening. The bathroom/shower issue was really big. I didn't know about ataxia at the time, but I knew something was going wrong and that's when I hired CGs to come to his house a few hours a day to help him with all of these activities. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Dec 19, 2010 3:10 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Pain complaints
Those have all been happening for a while now, Lynn. :lol: He can't do anything in personal care by himself at this point. Most of the time, I wait for him to TRY... and then I finish the job. He still attempts to shave himself and brush his teeth. He puts on his socks... but can't put on his pants or underpants. He can't button a shirt or even put one on... He can't figure out where the sleeves are.

And yes, I clean him up after the toilet. :oops: He thinks he has 'hired someone to help him.' It's me!!! :|

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sun Dec 19, 2010 3:26 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Pain complaints
Oh boy, I didn't realize you were in those stages now. Bet you love having that "hired help", huh?!

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Dec 19, 2010 3:39 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Pain complaints
Leone, I also have to do everything, even shave Fran as he can no longer do it. Its odd, before his rapid decline the socks were the first clothing item he could not put on.
Fran balked about the handicapped toilet but I bought it anyway. What a help it is for me, once he has his BM it is so much easier cleaning him up afterwards as it sits higher. It can be adjustable to different heights. I just slip my gloved hand between the toliet bowl and his toilet seat. Bernie


Sun Dec 19, 2010 7:03 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Pain complaints - Bernie
That sounds like a good tip, Bernie. Maybe I'll reconsider..

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Sun Dec 19, 2010 7:19 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Pain complaints
I notice that I keep coming back to this thread ... and the complaints about pain continue. I will talk with Dale's neurologist about his pain this week. However, I wondered about the differences in the pain medications that have been mentioned in this thread: Fentanyl, Vicodin, and Norspan. Why would one choice be better than another? I suspect that a 'patch' would be a problem for Dale since he has extremely sensitive skin.

As I posted earlier, he falls into the chairs causing back pain. He is trying harder to use the strength in his arms to lower himself... but he often forgets or loses his control... and down he goes. About a month ago, he broke a toilet seat from landing too hard on it.

Most of today, he was solidly delusional. He was convinced he was attending a golf tournament. He made a phone call to friends about it. He seems embarrassed a bit about it tonight.

Frequent trips to the toilet today are suggesting UTI.... and I hope not. His general condition is much worse than a month ago. We are both 75 and feeling it.


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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Tue Dec 21, 2010 8:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3396
Location: Vermont
Post Re: Pain complaints
One choice can be better than another solely based on the person taking it. So many with LBD seem to react differently to the same drug, so you are at the mercy of hoping that your dr. can try the right one early on, starting on a small dose in case there are negative side effects. There is no one right choice for LBD patients - that's one of the very frustrating things for everyone. It's trial and error for most people from what I have seen. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Dec 21, 2010 8:50 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Pain complaints
Also, I have noticed that pharmacists also can be very knowledgeable about drug interactions and effects. We have an excellent pharmacist in the local hospital and my mother's doctor often discusses meds with him. He has made some great suggestions. Anyway, if you know your local pharmacist, he or she might be another resource.

But I believe Lynn is right--it is so hard to predict because every LBD patient seems to be different! Trial and error is right.

Julianne


Tue Dec 21, 2010 11:14 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: Pain complaints
Bernie.... Dale complains about pain in his lower back every day. I've talked with both of his doctors and they agree that treating it with OTC pain killers is our best option. I give him a 24 hour pill at bedtime and an Advil in the morning. He still complains - when he's not talking (endlessly) about something else. I used to think he was hurting his back by falling into chairs ... but he can't sit up anymore as of this past weekend. There will be no more falling into chairs.

Someone suggested that 'pain' sensations may be manufacturered in his head... just like everything else that's going on.

Dale cries often these days. He is fully aware of his physical limitations.


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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Jan 31, 2011 4:01 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Pain complaints
How very sad for Dale! Yes, of course Lewy can 'manufacture' pains where no pathology exists but the pain is just as real, nonetheless.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Jan 31, 2011 4:14 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Pain complaints
Leone, I am so sorry to read about all the recent changes in Dale.

My mother is now on the lowest dose Fentanyl patch (placed on her back, where she can't pull it off) and two Vicodin three times per day. OTC pain relievers did nothing for her. Even with all that in her system, at times she still complains bitterly of pain in her lower back, hips and knees (not always all locations at once).

I used to worry about all the pain killers and spoke with the doctor and also the DON at the SNF, but both said that if she is perceiving pain, she should be treated for pain, even though I suspect it is not necessarily pain in the ordinary sense of the word. For instance, I notice that she complains of pain more when something else is also upsetting her, for instance.

And she is also extremely weepy, most often in the morning but it could be at any time. I wonder if it is due to her awareness of all her limitations.

Isn't it just so sad to watch these changes?

Hang in there,

Julianne


Mon Jan 31, 2011 4:24 pm
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Joined: Thu Dec 02, 2010 1:44 am
Posts: 93
Post Re: Pain complaints
Leone, Fran also has pain everyday, and I was able to control the pain with Tylenol and Sports Creme. Today was so intense that I called his neuro. The only response I received from the front desk was that they are not a pain clinic. Needless to say I was rude to her after that remark. I tartly told her been there done that with no relief at all.

I explained the situation and after she talks to the doctor, she will call me back. It is now close to 5:30 and I doubt if I hear from them today.

I also think that he is once again declining with his cognition. We both had a really rough day. Bernie


Mon Jan 31, 2011 6:24 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: Pain complaints
I think a really good pain medication for neurological pain is Neurontin. It can be given at night and it helps with sleep. It also does not appear to make LBD symptoms worse. I would suggest you discuss this medication with your doctor and see if he thinks it might be of help. Smiles, Nan


Mon Jan 31, 2011 7:08 pm
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Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: Pain complaints
Frank takes 300mg gabapentin/neurontin, at supper time and goes to bed between 6-6:30 most nights, he doesn't have any pain but I think it helps him get a 12-14 hr sleep. He also takes 10mg of namenda and 5mg of zyprexa, that could also be helping. Whatever it is, I like the 3-4 hrs I have at night and the 2-3hrs I have in the morning. That is my respite.

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Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Jan 31, 2011 8:08 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: Pain complaints
Yes, forgot to mention, my mother is also on Neurontin. But it wasn't enough. The narcotics are the only things that come close to controlling her pain.

Julianne


Mon Jan 31, 2011 8:41 pm
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