Parkinson's Movement
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Difference between "on" and "off" time for me

I'm embarrassed to post this video but this is the condition I'm in when I'm feeling my best. My "off" time is the total opposite, my body locks up and I totally hate this period. I'm am little over dosed but this is how it is when I actually feel normal again. Unfortunately with in a matter of seconds I can hit my "off" time. My medication schedule is Stalevo 50/200/200mg five times a day every three hours starting at 6am. There is no way I can go three hours in between doses, more like 11/2 hours. Then of course trying to eat makes it harder. This is extreme but it's the only way I feel good anymore. I'm not like this all the time, my heart would give out but if I have to do something or ride in a car for any length of time this is the condition I'm in.

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I'll add I move more listening to music as in video and at times have stayed up all night.

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I'm sorry, do you ever get relief?

You look young ? How old are you?

I have early onset Parkinson's, I got it when I was about 47 but you look really young.

Maybe you're older than you look because you're playing 80s rock , ha ha

I only know this because I'm an old-school 80s rocker chick myself.

Do you have any videos of you when your medication is working?

Also do you have a hard time sleeping just curious because I wake up shaking a lot and I was just wondering if you get the same thing?

Thank you for sharing your video

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I just looked you up, got all the answers to all my questions.

I relate so much with you.

I never sleep either, I keep telling myself nobody's ever died from lack of sleep but it's getting brutal.

I also have back issues and they want to do surgery on me.

I am 53 now so we both got it young .

Just want you to know that Somebody out there understands what you're going through.

No one can really understand what another person is going through but I think I understand as much as another human being can.

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i'm 57 and had PD for 12 years. this is a video when the meds are over working. i feel good. i'm off now and can't move. i'll reply better I'm bad shape now.

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Thx 4 getting back to me .

Hang in there and will talk when your feeling better -

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My off period didn't last too long even after eating. I find sinemet works better after meals than stalevo. The video shows what I look like if I a dose earlier or double for a reason. I feel good. My off time I tend to lie in bed praying that it will go away. I don't endorse taking more than you should, for me I need it when I have to go out somewhere. I do not like being anywhere but home during off times. I was 45 when I got it, 57 now. Yes 80's rock, active duty Navy during the 80s and 90s. Brings back good memories.

Sleeping is hard. My problem is i turn off, I wake up stiff and have to get up take a pill then I'm watching the clock.

I have sciatic pain down both legs which doesn't help.

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I just hit my off time and now i'm stuck in my chair.

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I'll just reiterate that this video does not show what you should look like when feeling good, much dyskinesia. I prefer this over dystonia any day. I feel pretty good at times not so wowed up. My wife and kids had never seen me like that, kept it hidden.

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I started amantadine a month or two ago and it has helped quite a bit. Especially with driving which I found very hard to do with dyskinesia...gripping the steering wheel like my life depended on it can get pretty painful.

Have you tried a amantadine? When I'm home alone quite often I will realize that I am moving all around in my chair non-stop while watching TV but when I have people over I spend a great deal of time concentrating on not squirming. That alone is tiring, the concentrating part.

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I've tried amantadine but my current Doctor took me off it. I've driven in this condition but usually I'm driven by someone else. If I want to get things done around the house I need to be in this condition or a little less.

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Are you doing regular exercise after diagnosis at the age of 45?

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That is one thing I don't do and I need to. I used to pump iron and now I have lost 30+ lbs of muscle mass.

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Thankyou for your bravery in posting this.

Like Enid I take Amantadine and it has been a great help.

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Man.... I am just exhausted watching.

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I was a 3 hour PWP. I was either just getting ready to eat or had just eaten. Therfore, I had one to two off hours between pills. My Neuro recommended Rytary (extended release CD/LD) for me. Now I take it every 6 hours. It is working very good for me. Still have some off times but not as often and not as deep. Well, I was doing good until I found out Rytary would cost me $,1000 per month. Fortunately, I was declared 100% disabled by the US Department of Veterans Affairs. Now they are providing the Rytary for me. Perhaps that is why I am feeling so good. 😊

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I may go back to rytary. I have Tricare prime so it would be cheaper. I have 0% disability from the VA. I have a friend who is 100% and there aint a damn thing wrong with him. I had to bring that up, I'm sure you deserve yours.

The video I posted is my "on" time. Maybe a little too much but I get stuff done.

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The funny thing is that my service time was so easy that I did not feel that I should stand when a speaker would ask for the veterans in the audience to stand. Then 48 years after I served my time in Korea, I learned that agent Orange was sprayed only during the year and one half that I was there. Now a PWP I feel I have earned the right to stand and accept it when people say thank you for your service.

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Mine too. Spent 2 1/2 years on two aircraft carriers and the rest of my time was a flight engineer on a P-3 Orion.

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Because I stiffen up during off periods, I understand. Usually, I try not to be out of the house during an off time. It can get quite embarrassing. Hang in there. Probably only us “ Parkies”, really understand what it feels like. Others can empathize etc., but until one actually goes through it, and all the ramifications of “on” and “ off” times, especially in somewhat advanced PD, does one say WOW! This is tough, to handle! So, trying to explain it just doesn’t cut it, sometimes, at least for me. We must not give in to PD, but remain strong, and find ways to deal with it’s insidious nature of interrupting our daily lives.

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I usually don't go anywhere any more because of off time. Had to go to a few appointments and locked up in the car. Hated it. Needed wheelchair when I got there. I stay in the basement of our house alone and I have a tendency to yell loudly (6000 sqft house) when I'm off mostly to let everyone know I'm suffering. Most of the time my sailor mouth opens. They always say "its not going to help" like they know what is feels like.

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I’m so sorry that you have to deal with this like that. I, too, pray that it will just go away. Like I always say, unless if one actually has PD, they really don’t know what it feels like. Michael J. Fox knows what it’s like, and is able to bring awareness of the plight of neuro-degenerative PD to others with his foundation. Perhaps, research will bring some answers that will help us, within our lifetimes. We must not give up hope! Take care of yourself and know that there are others, with PD, who care,dfasci.

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You bring up an interesting point, only the PWP'S totally understand what a down period is like. I would be interested to hear the different explanations to the question "What does it feel like to be down?" to a non PWP from this group and how effective do you think your answer is?

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My Dad has a medication pump to his duodenum. It regulates the medication so his dosing is very consistent.

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My problem is yes I have a schedule but never remember to follow it. Always forget when I took my meds last.

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By the way, I stayed up all night tonight doing stuff in my basement. Stayed up most of last night also. I'm going to end up doing myself in which come to think of it unfortunately has crossed my mind once or twice.

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Good morning dfasci

I believe you are addicted to your meds. Your are overdosing and are high. I am not sure what it will do long term but it could not be good. If the dose of carbidopa levodopa you are taken does this to you a small dose should help also but without the wild muscle movement.

Please seek help

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I'm working on a fix. I would get upset after taking a dose and no change after an hour then I would take a smaller dose pill every half hour until I got results.

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Good morning dfasci it is 1:42 am. I just woke up from a bad dream. I was lost and could not get home. I am still shaking from it was so real. I am having a small amount of dyskinesia at the moment but it is minor. You said in one of your replies that you don't take you meds consistently and you some times you over dose. You know what the problem is it is just what i just typed. If you have this much dyskinesia taking only 1 50/200/200 every 3 hours you are very sensitive to the med. i can and do take 3 25/100 C/L fast release and 1 50/200 ext release C/L every 4 hours along with 2 6 mg Ropinirol (Requip) once in the morning with very little dyskinesia. When i do have dyskineia it only last about 15 minutes.

I stand by what i said in my first reply. If you feel good or normal with this much dyskinesia you are not thinking clearly and need help. Please let your love ones help you get help. You need to get in a routine of taking your meds on time. You should get a Elexa (Echo by Amazon) it can help you keep up with your meds.

Please get the help you need.

.Please let me know how you get along.

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I'm getting along better. The only thing that throws me off is meals. Seems like after I eat my "on" time goes away. While I wait for my meds to work I try not to take more than needed. That video showed me in an over dose state.

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I've started a better schedule but I'm going to consider DBS now. I'm on a 2 1/2 hour schedule and that is not enough. Meal times are the big issue.

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