I’ve been busy the last few days trying to get used to the TAP and regulating my meds and diet to try to deal with the colon problems I’ve had for well over a year now. The TAP dental appliance is doing as well as I would expect. I slept about 7 hours last night, which is a huge improvement for me. I am still waking up a couple of times in the night to go to the bathroom, though, so it’s not yet a completely restful sleep. It’s time for me to make an appointment for a new Sleep Study, to see if the device is handling my Apnea appropriately. That will be the determining factor on whether I can get my insurance to pay for the TAP or not, and whether it’s worth using.
I am pleased to see that there is a way to use the TAP device as the anchoring mechanism for a CPAP mask, if it becomes necessary to go back on that. A nasal pillow delivery system can be attached directly to the dental appliance, so there would be no straps or mask all over my face. That’s encouraging, as it means I can look forward to either getting by with just the TAP, or the TAP plus CPAP – but NO MASK!!! So, I’m very optimistic about the coming Sleep Study.
As for the elimination situation, I am somewhat improved, although certainly not where I would like to be. I’m still belching and having gas problems, but not having as much trouble actually going to the bathroom as I was. So, the Acidophilus, the Bentyl prescription, and an extra Metamucil capsule a day seem to be the right plan of attack for that problem.
DH and I have been searching for some practical ways for me to keep track of all my pills, the dosing times, and a way to effectively keep me on schedule. I seem to have some kind of Freudian aversion to remembering to take my pills. I hate having to take so much medicine, and I think it’s causing some kind of passive aggressive reaction that I’m going to have to overcome. We’ve taken some positive steps to get over this hump. We bought two Plano tool/fishing tackle boxes, each with 4 storage boxes in it. That gives me enough boxes for 8 days, so I can make up meds once a week and have a spare. Right now I am taking medicine at 12 different times a day, so I put a numbered sticker in the bottom of each little compartment, with the dosing time on it. I can take the small box for one day with me wherever I go fairly easily. I even found that I could use my Bible cover to “hide” my pills on Sunday. I just carried my Bible loose and put the pill box in where the Bible would have been. I have to take a dose between Sunday School and Church, so this worked nicely.
Getting me on a dependable schedule was the next problem to handle. I searched for days all over the Internet, looking for pill reminder systems that I thought would work for me. Most would not give enough alarms to suit my needs, or any PWP’s needs, for that matter. PWP tend to take our meds closer and closer to each other as the disease progresses, so it’s not unusual for a Parkie to be taking something every hour during the day, and even getting up in the night to take something. Also, some of the more promising systems only allowed you to set pill reminders from say 8:00AM to midnight, and my first pill is at 5:00 AM.
So, I ended up buying a Timex Ironman Data Link watch, which can be connected to the computer via USB. It’s like having a PDA on your wrist. It came yesterday, but I have been studying everything I could find about it while I waited for it to come, and I had my pill schedule all ready to send to the watch. It worked like a charm. It beeps and the face lights up and flashes for several seconds, and the names of the pills I need to take scroll across the watch face. If I don’t push a button on the watch, I get another reminder in 5 minutes. Since I’ll be wearing it, I’m much more likely to heed the reminder. I also have the reminders set up on Outlook, since the computer is on all day long, anyway.
The watch needs to be quite large, as you might expect, so it’s the size of a man’s sports watch. I don’t mind that, if it keeps me from forgetting a pill, as I have been prone to do. For now, it’s in my pocket, because I’m going to have some links taken out of the band. There’s a lot to learn about this watch, but the main thing for me was the Alarm mode, as it allows up to 200 alarms a day! And that was super easy to get up and running.
My tremors still remain, not as bad as they were when I went to the ER, but still enough to make me feel like I’m trying to walk on Jello, and it gets worse as I get tired later on in the day. I use the walls and the furniture here in the house to steady myself, and I have managed to do without my cane at church, by the hardest. But anywhere else we go, like our Date Day, or to go out to eat, I’m using the cane. The hand tremors are also more prominent, and don’t seem to ever go away completely, but I can handle a fork and spoon OK, and type, so I can live with that.
My biggest problem has been the odd about to pass out feeling I’ve been getting after lunch and supper, but not breakfast. We’ve checked my blood pressure during a couple of these attacks, and it’s always low, like 98/58 low. I can’t do much but sit very still and wait for the feeling to pass. I have found that eating something sweet makes me feel better, but that may just be because it’s a comfort food for me. Or, it may means that this feeling is from a low blood sugar situation, rather than a low blood pressure one.
We may have narrowed it down to being an interaction between the Sinemet and the protein in my meals. Yesterday, just as a test, I had a vegetable lunch without any meat, and I did not have the weird feeling later on. So, I’ll try that again for a few days, and see what happens.
Dear sweet hubby took over the compost making task for me for the last couple of weeks, but I did it all by myself this morning. I’m very tired, but feeling good that I was able to accomplish it. I’m also sweeping off parts of the driveway almost daily now, and the deck and patio underneath every once in awhile. That gives my arms and shoulders a good workout, and it’s good for my balance, too. I’m also using the trekking poles the whole time at the track now, where I usually do 3 laps, and then the leg exercises and my Tai Chi. My balance is still way off, so the Tai Chi looks pretty ragged, but I’m doing it anyway. After all, nobody but me knows just how pitiful my form is, right? 😉
So, I see progress with several areas of concern, but disappointment that I am in nowhere near as good a shape as I was before I had the Celestone shot that sent me to the ER.
I continue to try my best to live each day with a positive outlook, and I think the Bentyl has helped with the depression I was dealing with.