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-----Original Message----- From: Peter Carras <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Thursday, December 03, 1998 6:09 PM Subject: Re: Ideas on preventing Colleen's husband's off-times >Ivan M Suzman wrote: >> >> ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-) >> Ivan Suzman 49/39/36 [log in to unmask] :-) >> Portland, Maine land of lighthouses 44 deg. F :-) >> ******************************************************************** >> >> On Wed, 2 Dec 1998 17:57:40 -0800 Coleen Pettit <[log in to unmask]> >> writes: >> >I was talking with my hubby 69/3/? I am cg....and I was asking if he >> >had any >> >off times. He says he just gets so tired in the afternoon/early >> >evening...when I am getting dinner prepared...about 5 to 5:30pm. He is >> >watching the news on the couch and nearly falls asleep...now...is this >> >off >> >times for you folks? >> >> For me, off-time is the same as end-of-dose stiffening up, whenever in >> my 24-hour day it happens.. Late afternoon off-time frequently occurs in >> those pwp's whose previous dose was way back before or at lunchtime. >> Coleen, this is just a HUNCH, but at what times of the day and evening >> does your husband take his medications? He may need an additional dose >> around 3:30 to get him through the late afternoon, if he has had none >> since lunchtime. Ivan, he takes his Sinemet 50/200 and eldepryl 5 mg when he wakes up from his nap around 3-4pm. So far taking eldepryl this late isn't affecting his sleep. >> >> > is that what you mean by off time? how long does Sinemet last...maybe that's what I need to know :) >> >> I can get drowsy or sleepy when my medications wear off, especially in >> the late afternoon. >> But by off-time, I mean difficulty or inability to move, a >> partialfixation of my facial expression, eye focus and if it's especially >> bad, cramps in the muscles of my legs, feet and neck. I may not even be >> able to turn my head without pain. >> . Also tremor upon attempted motion and inability to get up from a chair >> or couch or bed without enormous effort. >> >> >also...I never saw him *freeze* so I asked him if he ever did >> >that..and he >> >said that sometimes in the am when he goes to get out of bed...nothing >> >moves... >> >> A sign of low dopamine again. He may need either late evening >> medications, or both those medications, and a middle of the night dose. >> >he has to wait till he gets sheets off of his leg/foot before >> >he can >> >move..is that what you call freezing? >> >> Probably he needs a dose of medications 3 hours AFTER supper. In my >> case, I need this, and because I'm in my 13th year of PD, I need another >> dose at midnight or so, and another at 300-330 AM. hmmm...I told him that when he does wake up at this time to take another pill..his legs get the best of him and he can't sleep...the dr said to take neurontin and sinemet reg 25/100... At these times, my >> system seems to run out of dopamine, and either I have an off-time, or if >> my energy and dopamine are both way down, a "freeze" of movement may >> occur. >> For me, a "freeze" is a pronounced loss of movement. My muscles become >> much more rigid. This excess muscle "tone" is not the usual "tone," and >> is therefore called "dystonia." Bob has started to complain about pain in his upper back left thigh...so now I am doing stretching excercizes on him..... If I am dystonic, i may akso have >> painful, curled toes. his left foot toes are curling..but he doesn't have any pain yet.. This is relieved by heat and medication, taken >> with a sugary beverage. can't do sugar...diabetic... >> But for others, a "freeze" is something different-it is a sudden state >> of statue-like immobility. This might occur under sudden stress, say, >> when an unseen person in a crowded store asks a pwp an unexpected >> question. Suddenly, the pwp is so distracted from whatever he or she >> was doing that his or her movement suddenly "freezes," as if caught >> between two options and absolutely paralyzed, unable to choose either >> one. interesting.... >> >> >he also has a hard time getting up from a chair or couch...his leg >> >muscles >> >are just not working..he has to use his arms... >> >> Coleen, if this is particularly true after eating, it may be that his >> diet has too much protein, blocking his medications, and causing an >> after-eating off-time. ahh...ok...I didn't know it happened so fast...yes, we do eat too much meat...I will see what I can do...THANKS...:) >> If this happens when he has an empty stomach, it is probably relieved by >> medication taken with fruit juice or a drink of soda. If your husband >> uses alcohol, this may depress his ability to get up. no, he doesn't drink..in fact.. he did an experiment and had some beers at home one nite and his tremor went away! >> >> >We need to raise up our couch like we did our other couch...Bob puts >> >wood under the couch to raise it up and then he can get up easier...I >> >will >> >help him to make it.....we work good together...usually lol >> >> The leverage of being higher off the ground and the warm companionship of >> a loving wife are helping him. Aren't you special, to take the time to >> ask these questions! I enjoyed answering them, and hope what I've said >> makes sense, and helps you and your hubby. thanks so much for all your help *s* Bob is a great guy....this is hard on him and I want to learn what I can do to help him! We will be married 10 years March 3rd..1999 :-) it just takes me awhile to get to all this mail sometimes...:) >> Telling us his medication schedule would help us to advise you. Plus, >> I want to see if my "hunch" is right about him not taking meds >> frequently enough! could be... >> > >> >I need to call the Well Spouse group here in Grants Pass, Oregon to >> >find>out when they meet...also...I have another number that I was given >> by >one >> >of the gals on this group....another group that might be nearby :) >> > >> >ok...I got this off my mind...we had just discussed this so I thought >I >> had>better write now :) >> > >> >thanks for listening, >> >Coleen :-) >> >> Good luck, Coleen! >> >> Ivan Suzman Portland Maine 49/39/36 :-) >>>Ivan, > >I must say thank you for answering Colleen's letter. We do not write, >but I do read your postings. You not only helped Colleen but you helped >me also. > >Rachel > I agree Rachel.... thanks Ivan...and I will keep up with this Coleen :)