I take madopar in suspension when I'm getting up first thing in the morning. It works very well. I normally take it at about 6 AM. But I have noticed that when I take my first of four Stalevo at about 9 AM it invariably seems to result in starting a two-hour "freezing" episode. This is not always the case but it is fairly frequent.
Also on some occasions in the evening I fall into a deep sleep. And I know that it is an indication that I will have difficulty moving about and getting ready for bed.
Does anyone identify with the symptoms and has found ways of working around them.
My husband is suffering in much the same way especially going through doorways or in tight places /turning and starting . His mobility is poor
18 months ago he had a partial knee replacement which he took a long time to recover from .
His other knee is now troubling him but it is difficult to work out if it is osteo or the parkies . His knees are inclines to flex /collapse .
He is taking Sinemet Plus and is also on a Rotigotine patch .
my h takes the madopar but not the stalevo. Think that apart from the pills the pd symptoms get affected by food, if he is very hungry or has just eaten he just has to go and have a good sleep. His freezing then follows the being immobile from the sleep although like you it doesnt apply first thing in the morning or in the middle of the night. However the freezing only lasts a few mins. Perhaps you could monitor the food thing and then tell the doc re the stalevo? Would be interested to know how you get on love sunray
Yes ours was free Sunray . Loylipos I would suggest you get in touch with the o Therapist and ask for an assessment .
I daresay each local council is different . At the same time he was given a bed grab rail, stair rail, and 2 toilet surrounds these are on long term loan . We have been grateful for the help and thry have made a difference .
Because he has been given attendance allowance , something we found difficult to even consider asking about . After all Parkinsons is non curable and things don't get any easier . He was also allowed I believe up to £500 for any other assistance needed . This is without a looking into our
They have put in place a step at the from and back door with a grab rail and at the moment we are waiting for extra rails to the front steps . At our own expense we had already put in one rail and installed an walk in shower .. We would never manage now without .
My husband is a proud man who has until now never ever asked anyone for help but now the when the chips are down I an fighting all the way for him ..
Sunray I have read that it is best to have smaller meals , almost like grazing , this can be difficult because you have to fit in with the tablet regime .
Recently I have found that after meals he needs the toilet . Previously had been having a struggle ..
It's a minefield isnt it COMPLEX !
Many thanks to you all for your comments.
As far as getting back into bed is concerned I intend to try bed rails.
On the other matter, freezing, immobility etc. I think that you are right to link our general condition to what, when and how much we eat. I was having an awful time in the mornings, during and after breakfast. I was having an enormous breakfast, but made up of what I considered to be very wholesome food.
The consultant neurologist who was looking after me, went over the details of my breakfast and spent a long time analyzing the position. We came to the conclusion that I was eating a lot of protein with my breakfast at more or less the same time as I was starting my daily pill routine. I had already read in one of the Parkinson's UK booklets about avoiding protein and [some] pills at the same time. But I didn't think it applies in my particular case. How wrong I was. He recommended certain changes to my breakfast regime, and mornings are now among my best times
I suspect also that your comments about [grazing] also hit the nail on the head.
Hi yes maybe we should try the grazing thingy although tis diff to fit in with the pills. Our neuro gets us to take the pills one hour before or after food and this makes it more effective, it works for us because h stomach can take it , I understand not everyone's can , amazing tho cos he had duodenal ulcers all his life! sunray
Dollipops, Just had another couple of thoughts. They keep telling me , and I keep forgetting about it that if you're frozen try rocking from side to side just to start some movement, I know you are on you're own so may not be poss but maybe you could try. The other thing is singing, try singing to yourself, they say this can initiate movement love sunray
thanks to Sunray and Johnnie and all who responded to my plea. To cut a long story short, by avoiding mealtimes for some pills (see Parkinson booklet) and careful timing of the pill regime, freezing is much reduced. I think I had been extending the period between pills in order to try and get a "longer day", really rather foolish.My routine now is Madopar.....6.30/ 7 AM. First stalevo is at 8:45 AM / 9:15 AM. The second stalevo is at noon, the third at 3.30 and the fourth at 7 PM.
It has been working now for about four days and I am keeping my fingers crossed.