For those who care for someone with Parkinson's disease
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By Confused72567 On 2013.04.28 12:45
I am the caregiver/daughter for my father who has suffered with PD since 2000.
He is now in the last stage of this horrible disease and I find myself at a complete loss of understanding.
I am hoping that someone can help clarify a few things for me.
I have tried try to talk to his doctors/careteam and am continously told "Well that is PD and that I need to remember every patient is different"
Please forgive me as I try to explain my concerns.
I have kept an extensive daily journal of my father's life since Jan. of this year and have noticed a distinct pattern.
He will have 4 "ON" days follwed by 4 "OFF" days.
During his OFF days, all he can do is sleep. He does awaken upon stimuli but quickly returns to sleep when stimuli stops.
He is taking one Sinemet 25/100 four times a day, along with several other non PD meds.
His doctors have assured me that his other meds are not causing this complication.
My father signed a DNR ( Do Not Rescitate) many yeas ago before PD onset. His family honors this wish, yet now I am faced with all of the descisions pertaining to his care.
I do not want to go against his wishes for my own benefit but I can not just sit by and do nothing.
During his "OFF" times I do encourage him to eat and drink as much as possible. To be told by him that he is full after only a few bites. I am afraid to continue feeding for fear of him asperating. In the last few months he has begun cheeking his food which scares the heck out of me.
He does have home health come out 5 days a week for 5 hours each day to where I can take "Me time" which helps immensly.
My question is. Is this pattern a known thing with other PD patients? If so, what should or can I do to give him more "ON" days.
Just today I read an article "Treatment of Advanced Parkinson's Disease" @ that states that Levodopa should be administered more frequently, they suggest up to 8 times a day.
My father is on Carbidopa/Levodopa 25/100(Sinemet) I have not had the opportunity to discuss my recent finding with his doctor yet, though I do plan to do so.
I am wondering if anyone else has ever been on such dosing and did it work to keep you in the "ON" days.
During his "ON" days he is able to ambulate short distances, feed himself, play dominoes, yet always needs complete care with matters of hygene.
During his "OFF" days he is a complete care in all matters.
Any help in this will be greatly appreciated.
God bless you caregivers and thank you for this time to vent.

By lilflower On 2013.04.28 12:55
My husband has had PD almost 20 years. As every one says each patient is different. His medication is taken ever 3 hours from the time he wakes up. 2 1/2 sinemet 25/100 5 times a day 1 sinemet 50/100 at bedtime. requip 3mg 5 times a day plus several other drugs. Just got company stop back in later.

By LotsaBob On 2013.04.28 13:02
confused 72567:

I think you need to talk to your fathers neur. It appears to me that his sentment of 25 / 100 is not enough. I take two 25 / 100 four times a day along with entacopone as an extender for the sentiment plus 1/2 of a requip. There are others on this blog that know a lot more then I do. They will probably reply tomorrow. I hope I have helped you and your dad. Atleast talk to his neuro about it. Hang in there.

By Confused72567 On 2013.04.28 13:20
Thank you for the responses so far.
Yes I agree I do need to talk to his Nuero and will be doing so in the days to come.
His medications have been an issue for us all in the past 2 yrs.
One doc says cut back, other says give more.
I do know that when they increase dose he tends to sleep more, which I strongly do not want to happen. What quality of life is there if you sleep through it. I want him to enjoy these last days.
What really confuses me is he does not seem to have the temors whether he is ON or OFF. So I say meds must be working.
Yet he has this pattern as I mentioned in my earlier post. 4 days ON & 4 OFF. Which in a way does make caregiving easier for me other than my concern for his dietary health but I would really like to get more ON days with him.
I guess I will just have to see what his docs say do but I greatly appreciate your response.

By Knoosy On 2013.04.28 15:19
As others noted, he may be under-medicated with 4 x 100 Sinemet a day. My friend is taking 4 x 250 Sinemet large tablets. Without it, he'd probably be a vegetable. Sounds like the doctor needs to increase the meds. Your father may come back to life. It's worth a try. Find another doctor if the one he has refuses to up the meds.

By LOHENGR1N On 2013.04.28 15:40
Confused, Hi and welcome to the forum. That isn't much Sinemet. I take 2&1/2 (25/100) 5 times a day along with a couple of other drugs. I know You don't want him sleeping more but you have to remember there is a trade off with every drug and his sleeping more might be an indication that the increase in dosage is making him more comfortable and giving him a restful sleep instead of less medication causing him to have problems sleeping and getting rest. Also if he is not getting restful sleep now but gets more with increase this might even out of after he catches up in time he'll have caught up with sleep and be more active and just well if we're exhausted all the time everything is a struggle even eating our meals and having PD is exhausting even when we are sleeping well.

As for Tremor, an estimated 30% of People diagnosed with Parkinson's Disease don't have tremors. It's not mandatory that tremor is present to have Parkinson's. Many People think that if no tremor no PD but that isn't true so this might help with your confusion on the tremor being absent. The on/off phenomenon usually relates to times between dosing, Meaning after taking medicine early it treatment effects of medicine will last till next dosing, then over time the effects don't work as long so We experience a lapse of effect before the next dose is due or an off period between doses. So I'm confused with your description of 4 on days followed by 4 off days. As Bob suggested I'd talk to his neurologist about this. Again welcome to the forum there's a great bunch of people here who will do their best to help with any questions you might have. Take care, best of luck and hang in there

By Confused72567 On 2013.04.28 17:40
Thank you all.
Your advice is well received.
I will be talking to his Nuero in the morning.
I apologize for the confusion of ON/OFF.
My father has 4 good days where he is able to do many things IE: Feed self, dress his upper body, speak clear, has good memory of past & present, play dominoes, sleep well through night, etc.
Then he has 4 days that directly follow where he is unble to do things like feed self, speak clearly, poor memory (at times not even able to know me by name) and does alot of sleeping.
He will awaken if I or his nurse speak to him but as soon as it goes quiet, back to sleep he goes.
The reason for my concern is that on the days he wants to sleep I worry about him getting proper hydration & the neutrients his body needs.
I suppose I am being a bit of a worrywart.
If he were not, I am sure he would have further troubles by now.
Leason learned here for me all ready lol. Be grateful for the good days.

By Confused72567 On 2013.04.28 17:45
Sorry as for TREMORS I apologize for the confusion.
What I meant by "He does not have them" is with the level of medication he is currently on his tremors are at rest, but when they reduce his medications Oh boy watch out for flying food.
I would much rather him be medicated to control tremors than to not and I am sure he feels the same.

By LOHENGR1N On 2013.04.28 19:14
Confused, Don't apologize for the on/off usage. I explain a lot of the "terms" here on the forum not to criticize or correct per-sea but because many Neurologists don't spend the time with patients and family to explain things. Talking with the Neurologists if we use those terms on/off regarding several days in a stretch Some think here's another expert tossing terms around from the Internet not knowing what they are talking about and shut you down tune you out and disregard your info. It's better to say I noticed He'll have a few good days followed by almost the same amount of bad days in a cycle? Do you know what that is or what causes it? Same with tremor, His tremor is very well controlled instead of he has none. It is a pity we have to tip-toe around some of these Doctors and not threaten their egos to get any info from them. So don't worry or apologize it's better to use them here than get ignored for using them at the Docs. Rereading my answer it could be taken as me nit picking so I wanted to explain my intentions which are only to help you get answers from his Neurologist. Take care, best of luck and hang in there. and keep asking anything you want to know about.

By chroop67 On 2013.04.28 20:11
I am not sure if my moms on/off cycles are as equal in length as your dads but definitely has them. Her 'on' periods usually involve increased activity but increased anxiety as well. After one of these episodes we know that an 'off' period is coming. We have struggled with lowering sinemet to decrease cognitive issues but then we will see less mobility. I think that this is how the disease progresses, more bad than good. My mom has very few good days and her off days scare her as she is unable to do anything.

By Confused72567 On 2013.04.28 21:13
Thank you. I did not take your response too be nit picking I am here to learn from everyone's experience with this disease.
Though my father was diagnosed in 2000 I have only been involved with his care since 2010 So everything is new to me.
His ADL abilities worsened in 2010 after he fell and broke his leg. Since then he has rapidly declined. His Neuro says he also has Dementia with Lewy Bodies So progression will be much faster.
I will be contacting doctors in morning to see what game plan they can find.
I will try to post what they try and whether it works.
Our parents sound very much alike. I am sorry that we are having to go through this. Yes we have tried the decrease of Sinemet to soon return to original dosing to restore assisted mobility. I guess I just need to learn to take the good with the bad no matter they come.
God Bless you all

By parkinit On 2013.04.28 22:35
I'm coming in late, but my spouse has had PD for the past 14 years. He takes pills 8x day 25/100 1,350 mg spread throughout the day. This is the max his doctor wants him to go as he has had psychotic episodes on more. Be careful of too much, be careful of too little. He does not have tremors either. The sinemet helps, but he still has more and more off times as the disease progresses, but I believe, as others have stated here, that you could obtain more on time with more pills. Just make sure he doesn't get too much dyskinesia and doesn't start acting as though he can conquer the world, can drive if he hasn't been driving, etc. Sure signs of too much sinemet, which is just as dangerous!!

By Confused72567 On 2013.04.29 14:22
Thank you for your response it was very helpful.
I have contacted his Neuro and they have increased sinemet to 2 tabs 4 times a day for now. If he is still having trouble with sleeping too much then we will increase again.
I am very blessed my father gave up his driving rights several years ago when he was still able because he knew then he was unsafe. So I dont have to worry about that.
Everyone who has responded I just want to Thank You which is never enough. You have given my heart & mind such comfort.

By parkinit On 2013.04.29 17:55
Hang in there, and I hope the increase helps. Let us know! We care.

By Confused72567 On 2013.05.01 10:06
My father's doctor called back yesterday evening and after much consideration has now decided not to increase medications after all.
His fear is that with increase his dementia will also increase putting him at greater risk of harm.
His advice was to adapt to the needs and that this is deeper progression.
He also recommended that I consider Hospice care. He said that since my father has progressed to this stage that further progression may be quicker and that I need too be prepared.
I have looked into Hospice care and from what I have seen it is not much more than what he receives now from home health other than he would no longer go to hospital for parkinsons/dementia related issues.
So I believe, since he has issues with changes in his life we will continue with the care we are getting now.
Though I am very hurt to admit that we have reached this point in the disease I do understand what the doctor is saying. My main goal is to keep my father safe and happy for however long God gives us.
Thank you everyone for your advice and God Bless each of you as we journey through this life.

By carman96 On 2013.05.01 14:40
Your father is lucky to have such a devoted daughter. Hang in there.

By jcoff012 On 2013.05.01 19:30
Confused, come back often for the support you need. Hugs and love to you and your family.

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