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 How many days in a row... 
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Joined: Wed Sep 23, 2009 4:44 pm
Posts: 5
Location: Jasper GA
Post How many days in a row...
My father in Law was "officially diagnosed" this month after about 8 months of severe symptoms. He is 76 and 3 years ago he was diagnosed with Parkinson's disease but after he moved in with us in Aug 08 we began to notice a whole bunch of really strange things that did not fit the PD. I brought the info I found on this website to the Nurse practioner @ the neurologist but she was not very open to labeling him with it at that time. 8 months later, his MD confirmed it. My question (for today) is "What is longest period of confusion/dementia have you all experienced before they fog clears?" Daddy Bill has spent the last 4 days in a total fog (didn’t recognize us, wanted to go "home", thought we were trying to hurt him), but this morning was almost back to normal? We are noticing that the spells he is having are coming more often.....we have never had to deal with these kinds of issues before, my husband & I are only 32 and this is a whole new world to us. :?

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"But this isn't what we planned!" and to that I replied "Thank goodness we dont make the plans!!" ~ Jeremiah 29:11


Wed Sep 30, 2009 11:51 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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What meds is your FIL on? Is your FIL properly medicated? See the Boeve "Continuum" paper for a treatment regimen you suggest suggest to the MD.


Wed Sep 30, 2009 3:51 pm
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Joined: Wed Sep 23, 2009 4:44 pm
Posts: 5
Location: Jasper GA
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He is currently on Seoquel (?) at night and takes Carvedopa/Levadopa (?) 3 times a day for the Parkinson's. I am drawing a blank on the strengths right now but I will look tonight. He also takes 2 different meds for Blood Pressure and the Dr gave us a script for Aricecpt that he wants us to try. Please forgive my awful spelling of these meds,,,I just worry to start anything new since his reactions have been so severe in the past. Thank you for responding!

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"But this isn't what we planned!" and to that I replied "Thank goodness we dont make the plans!!" ~ Jeremiah 29:11


Wed Sep 30, 2009 4:11 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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In order to see any improvement with the dementia symptoms, you need to try Aricept, the Exelon patch, Razadyne, or Namenda. Nothing else he's taking is for the dementia symptoms.


Wed Sep 30, 2009 9:08 pm
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Joined: Fri Jun 19, 2009 11:23 am
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jencleg

I agree with Robin. My husband is on Seroquel 50Mg XR, Aracept and Namenda. These days I am still reading posts but almost feel guilty to complane about anything as my LO is doing REALLY well since getting the above combination therapy. I know it won't last but I cherish every good day we have together.
Listen to Robin. She knows what she talks about.
Mary


Thu Oct 01, 2009 11:21 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
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Jencleg,
Welcome! You are both so young to be dealing with this but as time goes on you will find a way to manage! The Dementia drugs are a must if you want to see some improvement . I hope you are able to learn a lot here, many are seasoned caregivers. So ask away!

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Irene Selak


Thu Oct 01, 2009 5:42 pm
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Joined: Thu Feb 19, 2009 12:45 am
Posts: 103
Location: St.Paul
Post meds
HI Jencleg,
My LO takes the sinemet 3 times per day. A very low dose of 10 mg each pill. He also has been taking seroquel for months. The seroquel is taken 5-6 times per day at 25 mg each. We started out with one and just increased as tolerated and as he needed. He has never been able to tolerate Exelon nor any of the other dementia drugs. They just didn't seem to agree with him - lots of stomach issues. He will hallucinate periodically but nothing like he use to. His confusion is rampant and he is incontinent now. The sinemet is helping him to be able to move around better than before. However, he is still in pain and aches all the time. He also takes wellbutron and xanax. He has been on those two drugs for years and years.
I have heard that the sinemet can cause more intense confusion and lower cognition. That seems to be what happened with my LO. However, he was barely able to walk so I will take what we have now. He has no idea what time of year or day or much of anything but at least he can move better -which makes it easier for me to care for him.
Good Luck and best to you and your family. My son and daughter are your age. It is diffucult for them to see their dad this way.
Heycon

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In & out of stage 4.


Thu Oct 01, 2009 11:47 pm
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Joined: Wed Sep 23, 2009 4:44 pm
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Location: Jasper GA
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Thank you all for the advice, I feel better knowing that you all have walked this walk before. The hardest part for us the back & forth. If it was just a little bit more of a consistant problem we might be a little better at helping him! We will start the new meds this next week, as I will be home with my babies for fall break. Throw a 7 year old girl & a 2 year old boy in the mix with a LB father in law you never get a dull day! :shock: The last 2 days were a little better till this morning, but we have an appointment to check for a UTI @ 4:30 today so maybe that will clear some problems. Thank you again for all the help & sorry if I wear out my welcome....yall have become my "Lewy Buddies" :D

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"But this isn't what we planned!" and to that I replied "Thank goodness we dont make the plans!!" ~ Jeremiah 29:11


Fri Oct 02, 2009 3:27 pm
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Joined: Sat Sep 05, 2009 2:58 pm
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Location: Long Island, New York
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{{{{Jen}}}}
Wow..that IS young to be dealing with this. All the best to you. The folks here are absolutely helpful. You will find much solace here. Don't be afraid to 'dump'!!!
Hugs,
Bev


Sun Oct 04, 2009 5:28 pm
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Joined: Sat Jan 27, 2007 8:38 pm
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Location: CA
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NOBODY wears out their welcome here!

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Renata (and Jerome-in-Heaven)


Sun Oct 04, 2009 10:41 pm
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Joined: Wed Oct 08, 2008 10:30 pm
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Location: Henderson, Nv.
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Wow, thats for sure...the door is always open here and someone is always around for support...an ear to listen...people to vent to. :) What would we all have done without each other??? I could not have made it through had it not been for the folks here. So sad that you have to go through this at such a young age...and I am sure its difficult trying to make the little ones understand why gramps is acting this way.

Mary..don't feel guilty because your LO is doing really well right now...its because you helped find the right drug combo for him at this time...and you will do it again when this combo wears off...its because you are a good advocate for him. You are so right to cherish the good days he has...those are the lasting memories you will want to remember. Those are the days that make it all worthwhile. Enjoy and savor every minute of the good times.

Prayers for strength to all of you.

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Dianne C.


Sun Oct 04, 2009 11:56 pm
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Joined: Sun Oct 21, 2007 4:18 pm
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Location: Acton, MA
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Jencleg, You have your hands full, be sure you stay well. Your children are very young, I don't know if your 7 yr old understands but there is a wonderful book for children by Maria Shriver. He may even be able to read most of it himself but it would help you explain "What's happening to Grandpa", that is the name of the book. I had bought it for my grandchildren and I think it helped them to understand.
Take Care,
Gerry


Mon Oct 05, 2009 8:05 am
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Joined: Fri Jun 19, 2009 11:23 am
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Dianne
Thanks for the words of encouragement. I believe your are right. We have found the right combination of drugs for now. Maybe feeling guilty was not the correct words but when others are writing about their problems, my problems seem so trivial compared to others. Somedays I feel like someone has made a big mistake and there is nothing wrong with him. Then something happens, like last night.
One of his class mates, (Jerry) from High School passed away. I feel as we should go to the funeral but last night he said, "Jerry didn't die. He's alive and healthy" and he showed me the picture in the obituary. Of course it was a lovely, healthy, smiling, Jerry in the obit. My LO said, "see how happy he is". This morning he still insists that Jerry didn't die. I don't know if I should make him go to the funeral (for a reality check) or let him stay home and continue to believe Jerry lives.
Any one help me with that. This is just one example of the false ideas he will get. Every time one of these ideas pop up, I feel so sad and disappointed.
Any one give me an idea on how to handle these false delusions?
Mary


Mon Oct 05, 2009 9:58 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Mary,
There's no point in making him go to the funeral. He doesn't need a reality check. YOU have to accept his reality, not the reverse.
Robin


Mon Oct 05, 2009 12:35 pm
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Joined: Wed Oct 08, 2008 10:30 pm
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Location: Henderson, Nv.
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Boy, thats a tough one, with many answers. On one hand, when they have delusions, it is real in their minds and there is usually no changing that thought. It may confuse him even more. On the other hand...if its early in the disease, at times, I would show him the proof and then kind of joke about it...its your Lewys trying to make you think otherwise. For quite a long time we would laugh at the Lewys and the tricks they were trying to play on his mind. We made light of it and he would not be frightened of the delusions. He would even say "oh those Lewys are at it again." :) Then as the disease progressed he would get very upset if we tried to show it was a delusion...at that point we tried to divert his attention away from it or would just ignore it if possible. You kind of have to address the situation at the time...but you must remember...in their minds it is real. If it doesn't hurt anything, let him think what he wants. I don't think I would force him into something like a funeral. My hubbys friends passed 3 months before him. He wanted to go to the funeral but he was just too tired to go that day...I was thankful for that. But it brought the reality to the front. He said "I am next to go." He must have known something all of us didn't...perhaps a premonition...he was the next to go. Good luck to you.

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Dianne C.


Mon Oct 05, 2009 12:45 pm
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