Momofa4yrold
05-05-2003, 09:48 AM
I am new to the Parkinson's board. I post on the pregnancy board alot. I am 7 months pregnant, and have a 4 yr old boy.
My husbands uncle has PD. He has had it for a long time. He is now at the point where he has to have 24 hour care. This came on rather quickly. He went from working in the garden one day to not being able to get up from his seat the next day. Right now my husband and other family memebers are taking turns spending the night with him and his wife to take care of him. His doctors are not very good. And don't inform us of anything. We do not know what to expect.
Right now he has memory loss. Uncontrollable tremors in both of his hands. He complains about his legs hurting. He is up all day and all night. He literally sits down and then wants right back up again. Someone has to pull him up from his seat everytime he wants up. He can walk (more like shuffle). He does not know how to get to different rooms in his own house (like the bathroom). He knows he has to go to the bathroom, but someone has to take him and help him with the task. And he urinates literally every 30 min. He soaks his bed at night. We did get him a hospital bed finally, but he still won't sleep. His doctor gave him a sleeping pill which only lasts 3 hours and then he is up the rest of the night just walking around and standing up and then sitting down. He cant hardley talk. We have to get right at his ear and then sometimes he don't make any sense. Like he wanted to know if the fan was hooked to the stove. And one day he was walking around the living room "planting corn". He was mad because everytime he would lay down the seed the wind would blow it away. I finally told him that we would just try to plant it again tomorrow when it wasn't so windy. He agreed but then spent the next hour looking for a can with a lid on it to put the seed in. The other night his brother stayed with him and his wife was asleep. He suddenly got very violent and started attacking his brother telling him to get out of his house. His brother yelled for his wife and he started attacking her too yelling for them to get out of his house. She got away and called my husband to come over there. When my husband walked through the door he knew him and said "Wayne get these people out of my house they are robbing me". My husband got him calmed down and back to sleep and the next morning he didn't remember any of it. He said he thought he had a dream that he was at the fire station and they were being robbed but he didn't see any evidence of it.
We are just so tired and worried about him. None of us know what to do or how to take care of him. I don't even know who to call to come in and help. We don't know what to expect. Is violence a sign of PD? Or do you think that was just a one time thing? I'm afraid his wife is going to get down because she takes care of him all day by herself. She just has help at night.
I'm sorry this is so long, but I didn't know where else to go. I cant find any info on the web.
Please help.
Taking care of George
Kelly
[This message has been edited by Momofa4yrold (edited 05-05-2003).]
My husbands uncle has PD. He has had it for a long time. He is now at the point where he has to have 24 hour care. This came on rather quickly. He went from working in the garden one day to not being able to get up from his seat the next day. Right now my husband and other family memebers are taking turns spending the night with him and his wife to take care of him. His doctors are not very good. And don't inform us of anything. We do not know what to expect.
Right now he has memory loss. Uncontrollable tremors in both of his hands. He complains about his legs hurting. He is up all day and all night. He literally sits down and then wants right back up again. Someone has to pull him up from his seat everytime he wants up. He can walk (more like shuffle). He does not know how to get to different rooms in his own house (like the bathroom). He knows he has to go to the bathroom, but someone has to take him and help him with the task. And he urinates literally every 30 min. He soaks his bed at night. We did get him a hospital bed finally, but he still won't sleep. His doctor gave him a sleeping pill which only lasts 3 hours and then he is up the rest of the night just walking around and standing up and then sitting down. He cant hardley talk. We have to get right at his ear and then sometimes he don't make any sense. Like he wanted to know if the fan was hooked to the stove. And one day he was walking around the living room "planting corn". He was mad because everytime he would lay down the seed the wind would blow it away. I finally told him that we would just try to plant it again tomorrow when it wasn't so windy. He agreed but then spent the next hour looking for a can with a lid on it to put the seed in. The other night his brother stayed with him and his wife was asleep. He suddenly got very violent and started attacking his brother telling him to get out of his house. His brother yelled for his wife and he started attacking her too yelling for them to get out of his house. She got away and called my husband to come over there. When my husband walked through the door he knew him and said "Wayne get these people out of my house they are robbing me". My husband got him calmed down and back to sleep and the next morning he didn't remember any of it. He said he thought he had a dream that he was at the fire station and they were being robbed but he didn't see any evidence of it.
We are just so tired and worried about him. None of us know what to do or how to take care of him. I don't even know who to call to come in and help. We don't know what to expect. Is violence a sign of PD? Or do you think that was just a one time thing? I'm afraid his wife is going to get down because she takes care of him all day by herself. She just has help at night.
I'm sorry this is so long, but I didn't know where else to go. I cant find any info on the web.
Please help.
Taking care of George
Kelly
[This message has been edited by Momofa4yrold (edited 05-05-2003).]
Sponsor
simby
05-05-2003, 03:48 PM
hi mom - these are all part of pd. It's a rough road. My dad did many of the same things. At times we "frightened" him.
i will try to write more later but didn't want to leave without a word.
------------------
(the truth is out there)
i will try to write more later but didn't want to leave without a word.
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(the truth is out there)
Momofa4yrold
05-05-2003, 04:14 PM
Thank you for responding. Please do write later. I really need someone to talk to.
Sorry to hear about your Dad. Just try to think that you had to go through that for a reason. God has a reason for everything. Maybe so you can help other people go through the same thing. Like me.
Thank You.
Taking Care of George,
Kelly
Sorry to hear about your Dad. Just try to think that you had to go through that for a reason. God has a reason for everything. Maybe so you can help other people go through the same thing. Like me.
Thank You.
Taking Care of George,
Kelly
Googy
05-05-2003, 05:02 PM
kelly,
My husband has been through all this.Now has calmed down some what he has dementia still but not as bad he is very disabled.
I am wondering what meds your Dad is on some can cause hallucinations which is what your Dad is having.
Keep in touch with us,
Googy
My husband has been through all this.Now has calmed down some what he has dementia still but not as bad he is very disabled.
I am wondering what meds your Dad is on some can cause hallucinations which is what your Dad is having.
Keep in touch with us,
Googy
Momofa4yrold
05-06-2003, 10:13 AM
I'm sorry, he is not my dad, he is my husbands uncle.
We are still very close and he is like a dad to me. My husband is the main caregiver other than his wife.
I'm not really sure what medication he is on. I will get a list and let you know. I know he is on a lot. I have wondered if all of the medication he is taking is nessessary.
We just don't know what to expect. Should we be watching for him to die any day now, or can they live a long time like this?
I have read some of your other posts, Googy. I'm glad you responded to me. How long has your husband been really bad?
We are still very close and he is like a dad to me. My husband is the main caregiver other than his wife.
I'm not really sure what medication he is on. I will get a list and let you know. I know he is on a lot. I have wondered if all of the medication he is taking is nessessary.
We just don't know what to expect. Should we be watching for him to die any day now, or can they live a long time like this?
I have read some of your other posts, Googy. I'm glad you responded to me. How long has your husband been really bad?
Hopalong5us
05-06-2003, 01:03 PM
Dear Mom of 4yr old
Your uncle (in-law) is probably on sinimet (carbidopa/levidopa) an excess of this drug stimulates the brain in much the same way LSD does. On overdose of this will also cause a person to be awake all the time. A very good friend of mine just went through this. Sounds to me like he is taking too much of the sinimet or other drugs that enhance or prolong the effects of sinimet. I would make sure he is going to a MOVEMENTS DISORDER NUEROLOGIST. If he is already it maybe time for an evaluation by another. I have done this a couple of times. TWO HEADS are better than one. You may get the 2nd doc to say he is the best he can be, and may have to go to a third. DON'T stop trying GOD WILL help by showing you the path, but you have to do your part, get him re-evaluated. That's my suggestion... I am hoppy and have had PD for about 10 years, correctly diagnosed for 7+. I am 47 years old and my wife has a day care. I love little kids, they are truly God's blessing and the fountain of youth.
GOOD LUCK, and ask GOD for help he will!
Hoppy
Your uncle (in-law) is probably on sinimet (carbidopa/levidopa) an excess of this drug stimulates the brain in much the same way LSD does. On overdose of this will also cause a person to be awake all the time. A very good friend of mine just went through this. Sounds to me like he is taking too much of the sinimet or other drugs that enhance or prolong the effects of sinimet. I would make sure he is going to a MOVEMENTS DISORDER NUEROLOGIST. If he is already it maybe time for an evaluation by another. I have done this a couple of times. TWO HEADS are better than one. You may get the 2nd doc to say he is the best he can be, and may have to go to a third. DON'T stop trying GOD WILL help by showing you the path, but you have to do your part, get him re-evaluated. That's my suggestion... I am hoppy and have had PD for about 10 years, correctly diagnosed for 7+. I am 47 years old and my wife has a day care. I love little kids, they are truly God's blessing and the fountain of youth.
GOOD LUCK, and ask GOD for help he will!
Hoppy
Googy
05-08-2003, 12:02 AM
Hoppy gave you very good advice.
In answer to you.The first 5 yrs were not to bad.But then it was more meds.We did go to a MDS which helped to see what he needed.I had to keep a log for 6 weeks.After a while that no longer worked for him.More changes.Try this, try that. In 1994 all the meds broke down.Dropped everyhing except Sinement CR.He has been on that ever since.The only thing to much or not enough,has and still a challenge.Because of
dyskinesias.Now taking less,but that makes him more disabled.It has been a long road now 29 yrs,he is getting old,81 and very frail.But still loves to eat,sleeps a lot,but very disabled.The dementia keeps him happy.
said to much,
Googy
In answer to you.The first 5 yrs were not to bad.But then it was more meds.We did go to a MDS which helped to see what he needed.I had to keep a log for 6 weeks.After a while that no longer worked for him.More changes.Try this, try that. In 1994 all the meds broke down.Dropped everyhing except Sinement CR.He has been on that ever since.The only thing to much or not enough,has and still a challenge.Because of
dyskinesias.Now taking less,but that makes him more disabled.It has been a long road now 29 yrs,he is getting old,81 and very frail.But still loves to eat,sleeps a lot,but very disabled.The dementia keeps him happy.
said to much,
Googy
Pelicangirl
05-08-2003, 03:16 AM
Hi Mom,
If you haven't already, get your uncle-in-law it a Movement disorder Specialist. It is well worth the money if your insurance won't pay, at least for one visit.He will try to straighten out his meds and get him on a schedule where they won't cause so many hallucinations.
Yes, hallucinations are part of PD, but this seemed to come on all of a sudden, in just one day or two. I really think an MDS would be very helpful, at least for your peace of mind.
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Pelicangirl (aka Ruth)
If you haven't already, get your uncle-in-law it a Movement disorder Specialist. It is well worth the money if your insurance won't pay, at least for one visit.He will try to straighten out his meds and get him on a schedule where they won't cause so many hallucinations.
Yes, hallucinations are part of PD, but this seemed to come on all of a sudden, in just one day or two. I really think an MDS would be very helpful, at least for your peace of mind.
------------------
Pelicangirl (aka Ruth)
Momofa4yrold
05-08-2003, 08:44 AM
Thank you. I know he is taking Sinimet I don't know how much. He went to his regular doctor the other day and she took him off some pain medication he was on and the sleeping pill he was on. Now he only sleeps 2 or 3 hours in a 24 hour period. He is still confused.
Last night he looked so bad. He was pale and he acted like he couldn't close his mouth. The salava just kept pouring out of his mouth. His wife said he ate a good dinner, but had just been really upset all day and nervous. She was alone with him for a while while we all went to church services. She ended up calling the church building and asking for someone to come and help her. He had to urinate, but he couldn't walk. She tried to get him to just pee in a bottle and it was like he couldn't make water at all. Then about an hour later he soaked his self. She broke down on me last night crying. I think it finally hit her that he is not going to get any better. She did get hospice to start coming in to help her during the day. So maybe that will help.
I will tell her about the MDS and see if she is interested in giving that a try.
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Chloe is due 07/27/03
Last night he looked so bad. He was pale and he acted like he couldn't close his mouth. The salava just kept pouring out of his mouth. His wife said he ate a good dinner, but had just been really upset all day and nervous. She was alone with him for a while while we all went to church services. She ended up calling the church building and asking for someone to come and help her. He had to urinate, but he couldn't walk. She tried to get him to just pee in a bottle and it was like he couldn't make water at all. Then about an hour later he soaked his self. She broke down on me last night crying. I think it finally hit her that he is not going to get any better. She did get hospice to start coming in to help her during the day. So maybe that will help.
I will tell her about the MDS and see if she is interested in giving that a try.
------------------
Chloe is due 07/27/03
simby
05-09-2003, 06:24 AM
((((((((((((mom))))))))))))
sorry to hear that he is having such problems. I will compile a list of things that help and post back.
(the people on this board have helped me with this).
------------------
(the truth is out there)
sorry to hear that he is having such problems. I will compile a list of things that help and post back.
(the people on this board have helped me with this).
------------------
(the truth is out there)
bananakins
05-05-2004, 01:11 AM
I'm sorry to hear about your situation.
my grandfather has had parkinsons for about 16 or 17 years now. he is in a home. everything has to be done for him because he cant do it himself. he cannot even raise an arm to wipe the drool from his mouth. he sits in a wheel chair and just stares. when he talks it is so quiet that we can barely hear him and it is accompanied by stuttering. its horrible to see.
my grandfather has had parkinsons for about 16 or 17 years now. he is in a home. everything has to be done for him because he cant do it himself. he cannot even raise an arm to wipe the drool from his mouth. he sits in a wheel chair and just stares. when he talks it is so quiet that we can barely hear him and it is accompanied by stuttering. its horrible to see.
Rubylock
06-02-2004, 07:50 AM
Hey Mom<-- There are some good books on the market that will answer a lot of your questions. Make a trip to Barnes & Noble. Early onset PD has some different symptoms than old onset PD. The older one is when PD starts the more likely are some of the more dreadful symptoms: dementia, hallucinations, paralysis. Early onset PD has symptoms but they are unique to each person both in presence (not everyone has same symptoms) and in degree (some have certain symptoms worse than others.) Whenever it starts the progress of the diseease is sure and steady, and if you live long enough to reach stage four, quality of life can be downright disheartening. But, there is lots of well funded research going on. There is hope for the future.
Rubylock
Rubylock
Googy
06-02-2004, 09:35 PM
Sorry,But I can see how much he means to you.
My husband had PD fo :angel: r 30 years.He passed away very peacefully a month ago I was with him.His dementia started the last ten years,He was in a nursu ing home for the last 11 months.He was 82.He got the care I could no longer give him.
Keep in touch
My husband had PD fo :angel: r 30 years.He passed away very peacefully a month ago I was with him.His dementia started the last ten years,He was in a nursu ing home for the last 11 months.He was 82.He got the care I could no longer give him.
Keep in touch