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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. > > > is that what you mean by off time? > > 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. 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." If I am dystonic, i may akso have > painful, curled toes. This is relieved by heat and medication, taken > with a sugary beverage. > 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. > > >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. > 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. > > >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. > 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! > > > >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 :-) > > >Reunited adoptee > >541-862-2226 fax..let me know first... 541-862-2226 > >Missing Links adoption support group Grants Pass, Or. > >[log in to unmask] or [log in to unmask] > >http://www.barysoftware.com > >******************************************** > >One Nation Under a Groove > >Rush for our Records! > >December 3rd, 1998 > >http://www.ibar.com/DEC_3/ > >******************************************* > >Oregon Adoptee Rights Initiative Measure 58 > >Our Birth Certificate: Our Right > >http://www.plumsite.com/oregon/ > > 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