Tag Archives: Sleep Apnea

7+ Hours Sleep Again!

Day by Day with a Movement Disorder Posted on by 8

I was able to stay in the recliner for over 7 hours last night! I’m still getting up several times to go the bathroom, but at least now I’m able to get back to sleep. I figure I’ll try turning the screw to advance my lower jaw maybe one or two more nights, and that should be enough. I’m making the Sleep Study appointment today to see if it’s controlling the Sleep Apnea properly. If it’s not, I can always advance it some more while they monitor it, until I find the right spot.

I will get an appointment for the flu shot today, too.

I’m also going to make an appointment with a Dermatologist today. I don’t want to ignore the fact that Parkies have a higher rate of Melanoma than the general population. Particularly since I’ve inherited a tendency to have lots of moles, some quite large, from both of my parents.

I’ve never been to a Dermatologist before, but I’ve learned my lesson and intend to get one who uses the hospital I like. There is a lady Dermatologist associated with my preferred hospital, and I think I would be more comfortable having every square inch of me examined by her, rather than by a man.

My inability to control my emotions is still a very aggravating problem. I started looking for some important insurance paper work this morning, and couldn’t find it. I’ve kept up with that stack of papers for several years now, but when I started to make a phone call referring to it, it was nowhere to be found. After searching everywhere I might have filed it, then looking in places I should not have filed it, I fell apart. Blubbering like a baby and getting DH all upset trying to console me. This awareness of my mental abilities deteriorating right before my eyes is extremely disconcerting.

I finally did find the insurance papers I needed, stuffed in the file folder with the information about Pop’s monument that I had worked on the same day I had been working on the insurance. This is some paperwork left over from when DH’s Pop died, as we were the executor of his estate, too. Not long after he died my dear hubby had colon cancer surgery, so some of the less urgent parts of settling Pop’s estate just got pushed to the background. Now I’m trying to finish all of it up, and get my Daddy’s all finished, too.

So, all in all, it’s been a productive day, as I was able to get done what needed to be done toward cashing the insurance policy, and I’m going to call and make the appointments just as soon as the doctors’ offices get back from lunch.

Once this insurance policy is dealt with, the only things left to take care of are the monuments. Pop’s should have already been engraved, so when I talked to the cemetery people, they were extremely apologetic that it had not already been done. And I haven’t even started on getting Daddy’s information added to the headstone.

I’ll be glad to have all this paperwork finished! Daddy’s estate will get out of probate at the end of November, and I need to be through with everything by then, so I can quit stressing over it.

YIPPEEEEE! 2 Nights in a Row!!

Day by Day with a Movement Disorder Posted on by 4

I slept for 7 hours last night and the night before, and I’m ecstatic about it! I hope that means I have found the right amount of gap on the TAP to take care of the Sleep Apnea. I haven’t moved the bottom jaw in front of my upper teeth by much, but it may be enough for me, since it took quite a bit to get my bottom teeth lined up with the top ones to begin with, thanks to my natural overbite.

This appliance is fairly easy to get used to, far more so than any of the CPAP masks I tried. I can turn on my side without a problem, and I don’t feel the least bit claustrophobic with it in place. It does require some rather vigorous jaw exercises each morning, to be sure the bottom teeth move back into their normal position. That leaves my right jaw a little sore for awhile, but it’s not bad and it goes away by the time I eat breakfast.

Some Things Better, Progress with Others

Day by Day with a Movement Disorder Posted on by 2

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.

Took a Rest from TAP

Day by Day with a Movement Disorder Posted on by 10

We went to the dentist yesterday for our regular cleaning appointments, and I took the TAP paraphernalia with me. I have noticed a faint clicking sound when I talk, which made me think it needed some type of adjustment. He agreed, and was able to add a little blob of something to the back surface of the mouth piece. It is supposed to equalize the pressure on my jaws for holding my mouth open for all that time. I had the denture parts in and out of my mouth several times before we left.

But when I tried to get them on last night, I couldn’t get the dental appliance on my teeth. After considerable finagleing, I managed to get the upper and lower part in, but then I had trouble latching the hook in front to connect the front and bottom sections together. So I took them back out and checked to see what the setting was marked on the device. That’s when I knew something was wrong with it, as it was way too high a setting for me. I changed the length of the mouth gap with the key that is provided until it felt comfortable again.

But once I had it in my mouth, I realized that some of the material he had used to build up the back of my jaw a little bit had landed in the wrong place, too. This has left a rough spot right where my tongue can get to it. Now, you may not be like I am, but if I have a sore or anything else that is a temporary visitor in my mouth, my tongue will rub on it compulsively.

That rough spot sent my tongue into obsessive orbit, every time I realized I was touching it. So, I didn’t sleep in the TAP last night, and I’ll have to see Dr. Deep today to get it smoothed out.

I used the cane all day yesterday, as was extremely wobbly, nervous feeling, and generally feeling like I have Parkinson’s, but managed to do everything that I wanted to do for the day. We did get the handicap placards, which will be perfect for those days when I have trouble moving, even with the cane.

Update on Dental Appliance for Sleep Apnea

Day by Day with a Movement Disorder Posted on by 4

I’ve been wearing the TAP device for the last three nights, and thought I’d better let you know what I think of it. All in all I’m very pleased. It’s certainly easier for me than trying to get used to the CPAP mask was. I would be lying if I said it is comfortable, but it’s not painful and I am pretty sure I will eventually wear it without particularly noticing it. I guess it’s about like wearing glasses for the first time.

There are a few things that have to be part of my routine now, because of the dental appliance. It is absolutely a must that I brush my teeth every night, something I’ve never really had a consistent habit about, hanging my head in shame, as I usually fall asleep in the recliner while watching TV. If I don’t, I’m just asking for a bunch of cavities. Also, I have to brush the mouth pieces every morning when I brush my teeth, and leave them out to dry thoroughly.

The big change is that there are two small pieces of pliable plastic that I have to stick in between my teeth at the corners of my mouth every morning to chew on for awhile. The idea is that the TAP pulls the lower jaw forward for sleeping, so in the morning, I have to move my lower jaw back into it’s normal position, so my bite will be correct. It’s kind of like chewing gum, I guess, but there’s no taste. It’s not hard to do, but it’s absolutely necessary. It’s supposed to strengthen my jaw muscles, too, which will be a good Parkinson’s exercise. PWP lose the ability to control their facial muscles eventually, so this should help me forestall the expressionless Parkinson’s Mask, as it’s called.

I haven’t made any turns on the device yet, so I’m still wearing it at the first setting, which has my upper and lower teeth meeting in the front. Now, for some of you, they already do that to begin with, but I have a noticeable overbite. That overbite is one of the main reasons my Sleep Disorder doctor thinks this dental appliance will stop my Sleep Apnea. I figure I’m going to be wearing this thing the rest of my life, so what’s the rush. I want to get used to it first, before I start cranking my jaw out any further, particularly since it’s already set to move my lower jaw out a good bit just to make my front teeth meet.

As far as my sleeping goes, I haven’t been doing much of that. I don’t really think it’s because of the dental appliance, though. I’ve taken Lunesta two nights now, and still didn’t sleep more than three or four hours. I made it to five hours last night, without a sleeping pill, which is the best this week. I’ve never found a sleeping pill that really worked well enough on me to justify taking it, so I can’t say I’m surprised the Lunesta didn’t help.

I’ve been pretty upset with other things that have been going on with my Parkinson’s right now, and I think that’s cutting into my sleep. Also, I’m on several more PD meds since my ER visit, and they may be making the insomnia worse. And, even with the extra meds, I’m still wobbly, although nowhere near as bad as I was before I went to the ER.

I am having some spells of being extremely spacey and unsteady, which pass after about an hour or so, usually right after meals. I’m guessing it’s the combination of all the PD meds I’m on right now, but my Neurologist will straighten that out for sure. I have them all spread out as best I could, so I’m taking something about every hour or two all day long.

I see my Neurologist tomorrow, and I’m very hopeful that he can sort out what needs to be done to help the insomnia and also give my Gastroenterologist some suggestions about medicines I can take to calm the colon spasms. He may have to change some of my PD meds, so that I can take an antidepressant, as that is the class of drugs that the colon relaxing medicines fall in. Oh, I forget to mention that I stopped taking the St. John’s Wort after the first day, as the more I read I realized it was in the category of an antidepressant, and I can’t take those right now.

So I’ll spend today looking forward to tomorrow and some answers, I hope!

Impressions are Made

Day by Day with a Movement Disorder Posted on by 6

I went on a feverish research marathon on the internet night before last, and printed out a bunch of pages of different dental appliances for sleep apnea. I also found several pages explaining exactly how to talk to my Blue Cross insurance people in order to have a fighting chance of getting this thing covered by my medical insurance. This sort of appliance does not fall under dental, as it really has nothing at all to do with the teeth. I printed a list of possible side effects, too, just in case I had any problems. Troubles are always easier to cope with for me, if I know I’m not the only one having them.

So, armed with all my paperwork, I went to my own dentist yesterday and had a long talk with him. I really like him, and have been going to him for many years. In fact, he has crowned almost every tooth in my head! LOL That’s just as well, too, as this appliance would not work if my teeth were not strong and in good condition. But, I digress. I was pleased with what he told me about how he did this process, but even more pleased when he brought my very own hygienist in to talk to me. It seems that she uses the very appliance that he was recommending! She explained that she could move her mouth around with it on, and that was something I was particularly concerned about.

She also told me about the exercises you have to do each morning when you take it out. If you don’t do that, you will pull your bite all out of alignment, not to mention have a lot of jaw pain. That’s not a problem, as I have to “exercise” my face muscles every day anyway, as part of my Parkinson’s exercises. These are designed to forestall the mask look of PWP. We lose the ability to use the fine muscles that control facial expression, and these exercises are supposed to prevent that. I don’t know if they will, but I intend to try, anyway. So, adding in some jaw and mouth exercises will be easy enough.

So, I did it. I had the impressions made and paid out 1,000 big bucks right there on the spot. That’s not cheap, by any means, and it certainly means I’d better be right about this one!! If you thought I was stubborn about trying to get used to the CPAP, just wait and see how stubborn I can be with that much of my own money invested in it! LOL I really feel like this is something I need to solve the insomnia and resultant brain fog I deal with every day now.

Of course, I will do everything I can to get reimbursed by my insurance company, but I had already decided I would do it, covered or not. I did call the insurance company yesterday to find out what forms I needed to get this approved, and then my Sleep Disorder doctor’s office to ask them to get Dr. A to fill them out. So I’ve started the ball rolling, anyway. I made sure I got the medical code for this appliance from the dentist’s office, too, so I could use that in my argument for coverage, if needed. I would not have known to do any of this if it hadn’t been for a dentist somewhere in California, of all places, who had a whole page explaining exactly what to do to get this appliance covered. Ain’t the internet great?

While I’m waiting the three weeks it will take to get this in, I’ll work to get the skin around my mouth back in good shape. Those masks have really done a number on my Acne Rosacea, with dry irritated patches all along my mouth on both sides down to my chin and across. My skin usually takes awhile to heal, once I get this irritated. I quit wearing makeup years ago, because everything broke me out, and I have to be very careful about any soaps or medicines I use on my face. That alone made me a poor candidate for cpap. Adding in the degenerated disks, which required that I be able to move around in my sleep, and I hope I can make a good case that using this “custom fabricated device” is a “medical necessity,” as the insurance company requires. Both of those conditions are documented in my medical records, so I think they have a fight on their hands if they try to deny this claim. I’m loaded for bear, and ready to take them on, but, hopefully, they will agree and I won’t need to fight them. I really don’t need that extra stress. But, what will be, will be.

Getting rid of the cpap frustration and looking forward to getting the dental appliance has improved my mood considerably, so I remain positive that everything will work out for the best. I do covet your prayers and good thoughts that I will find adjusting to the mouth piece to be an easy transition.

The device I’m getting is called a TAP, which stands for Thornton Adjustable Positioner, and you can read all about it here and here, if you’re interested.

CPAP Goes Bye Bye

Day by Day with a Movement Disorder Posted on by 7

We turned the Cpap machine back in to the Durable Equipment Company yesterday. I struggled for 6 weeks, trying to adjust to different masks, but I never could find anything that worked properly on my face, with my Acne Rosacea skin problems, and giving me the ability to sleep on my side comfortably.

So, I saw the Sleep Disorder doctor yesterday, and he agreed that I was just not a good candidate for the Cpap option for controlling my mild Apnea. He agreed that I probably needed to control the apnea I have, even though it’s mild, because I still have insomnia, and it’s affecting my thinking skills and leaving me exhausted every day. If it weren’t for the Parkinson’s, I don’t think he would have ever put me on a machine to begin with, as I have an apnea score of 10. That’s probably as low as it goes, from what I understand. That means 10 episodes of apnea an hour. But if I were to get a full night’s sleep, that means as many as 80 times a night I would momentarily stop breathing. My brain can’t afford that amount of disruption, as part of it is already working on 20% efficiency – the part that makes dopamine.

So, we’ve moved on to another possibility, and that’s to get an oral dental appliance. I’ve been doing the research online, and this looks like a good alternative for me. I won’t have deal with skin irritation, as there is no headgear, and since it doesn’t depend on any kind of forced air, there won’t be any leaks. It still means getting used to something foreign, in this case a mouthpiece specially molded to my teeth by the dentist. This contraption is designed to pull my bottom jaw forward as I sleep, much like the way a medic does when they give CPR. That opens the airway, and should prevent the apnea. The tension on the jaw is done gradually, so the body has time to adjust, at least that’s the way it’s supposed to work.

I have an appointment today with my own dentist, to see if he could do the work or not. His office said he could, but I’m not so sure about that. This sounds awfully specialized to me. But I trust him to tell me if he can or can’t do it. If he can’t, the Sleep Disorder doctor will send me to an oral surgeon to get one. I will need to have another sleep study after I’ve been on the appliance long enough to pull my jaw forward, but that’s no big deal.

The other area of concern is that this is probably not going to be covered by my insurance, the way the cpap was. I will be talking to them today, to see if that can be worked out. I did find a very detailed explanation of what needed to be done to get an insurance company to accept the procedure as insurable. I’ll be using what I learned there to help me fight for coverage, if necessary.

I am very thankful that we are financially able to consider something like this, insured or not. I read what had to be done to get Medicare to pay for an oral dental appliance, and it involved paying for before and after sleep studies, plus paying for the mouthpiece itself, and then trying to get Medicare to reimburse. That’s an awfully expensive proposition. At least my insurance will pay for the Sleep Studies, if nothing else.

The biggest drawback, at this point in time, is that there is no guarantee that I can adjust to the feel of this thing in my mouth, any better than I did the cpap mask on my face. And this can’t be turned back in for a refund, the way the cpap machine could. We did get stuck with the mask part, though. We’re stuck with the expense of the dental appliance, like it or not. It’s not like you could turn THAT back in for a refund! LOL

DH and I feel like it’s a reasonable use of our money, though, so that’s not going to stop me from trying this procedure. I’m not a quitter, and I intend to keep trying, until we find some way to improve the quality of my life.

Trying a Different C-PAP Mask

Day by Day with a Movement Disorder Posted on by 10

This makes the fourth different style of mask I’ve tried, if you include the nasal pillow they put on me in the Sleep Study that I almost went hysterical over. And, this is the last one they have for me to try. So, it’s get used to this one, or I’m just not going to be able to do it. The only other chin strap they had was just not what I had in mind, and I could tell it wouldn’t work. And, I would have to have paid for a change on that, unlike the mask itself. I have 30 days to decide if I can tolerate this mask.

I had initially categorically turned down even trying on the full mask, which is what I am trying now. At that time, I was still adjusting to the whole idea of it, and the thought of having nose and mouth covered up was just too claustrophobic sounding to me. Now, as I have gotten used to having this claw on my face, it seemed like it was worth trying, as a last resort. It does solve the mouth breathing problem, without having to wear anything extra. And that’s a big plus. It leaks though, as I have no chin, and a pug nose, with nothing for it to hold onto. I did sleep longer last night than most nights, so that’s a positive sign in the right direction. When I woke up at 2:30 to go to the bathroom, though, I couldn’t get it to stop leaking cold air down my neck. By the time I readjusted it somewhat, I was wide awake. I made myself stay there until almost 3:30, though, figuring it would help me adjust to it, even if I were not asleep.

This whole frustrating experience has really been a test of my patience and commitment to see this thing through. Things have always come pretty easy for me, if I really wanted to learn how to do something. I’m not used to having to work so hard to adjust to something new, so this has been a real challenge. DH says when I get mad at the straps I look like I’m about to have a conniption, flailing at my face and yanking the straps off. ROTFL But it’s no laughing matter at the time. I have a new appreciation for students of mine over the years who would get so frustrated when they didn’t understand the math I was trying to help them with. A pity that I hadn’t had an experience like that then, so I could have been more empathetic.

My Sleep Apnea is only mild, according to the doctor, so it’s not like I’m going to die in the night if I don’t use the machine. But, he wants me to use it, because he feels it will help with my PD symptoms, particularly the brain fog and fatigue. I would love to get out of this haze and have more energy, so I’m trying, really trying to make this work.

I would appreciate your prayers and good thoughts to help me be comfortable with it, as I continue to pray for this each day.

Bits of This and That

Day by Day with a Movement Disorder Posted on by  

I’ve been a good girl, and I’ve tried to use the C-Pap machine every night. I can only say try, because I’m still not using it all night long. I did manage to keep it on for 6 hours on Saturday night, and I thought I had it licked. Then last night I couldn’t stand it past 1:30AM.

I’m pretty much used to the nose canula now, but the chin strap contraption is quite another matter. I’m going to call the tech again this morning for another appointment, since I only have another week before I’m stuck with whatever equipment I have after 30 days. I have Acne Rosacea, which normally is not a problem for me, as I quit wearing makeup, except for lipstick, many years ago. The reason I bring that up is that all these straps and bands is irritating my face. I’m starting to get red patches around my mouth where the chin strap is rubbing as I turn in the night. There are several other types of chin straps available, so I’m hoping she can find something else that I can use.

We’re in the middle of a cold wave right now, with high temperatures in the 90’s! So, DH got up this morning in the mood to go walking. We were out at the track at 5:15AM, and there were already people out there walking. It’s really the only time of day that it’s safe to be doing it right now. I did 3/4 mile, plus my knee and shoulder exercises, and the Tai Chi, while he did 2 miles. Not bad for the first time we’ve been there in several weeks. Of course, I’ve been walking around at home and working a little bit in the yard each morning, so I was not out of shape too badly. Maybe tomorrow I’ll walk a mile, but I won’t push it if I’m not ready. I learned that lesson really well.

The gas is still just as much a problem as it has been, and I’m supposed to call my Gastro this week to let him know how I’m doing. I’ll wait a few more days, just in case DH’s explanation is right. He thinks I need to give myself a few days for the colon to adjust after the GoLYTELY, and he’s probably right.

I also noticed that the tremor in my hands is becoming more noticeable, and showing up more often. I’ve not had tremors up until recently. Balance wasn’t so good yesterday, either. But I’m not in walking shoes on Sunday morning, and that could be it. I am wearing flats, with as much support as I could find, but I never feel as secure when I wear them. I’m not sure what I could wear that didn’t look like athletic shoes, but I’m going to have to find something. Part of the problem right now is that I have more tissue swelling than I have been having. I’ve been on a diuretic for a long time, even before I was diagnosed with PD. But now, my fingers are so swollen that I can’t completely close my fists. My ankles are badly swollen, too, and my weight is up, which I’m assuming is fluid.

So, I’m still dealing with lots of little problems, none of which, hopefully, are serious, but all are things that lesson my quality of life. I am thankful that I am in as good a shape as I am. Reading about all the problems that other PWP have makes me feel very blessed that I have a wonderful hubby to help me when I need it, and sympathize with me when I need that, too. I feel for those Parkies friends whose symptoms are so much more debilitating than mine are, and pray that they have a good day today.

Trying a Different C-Pap Mask

Day by Day with a Movement Disorder Posted on by 4

I took the c-pap stuff back to the supplier yesterday, and they have changed me to a very soft nasal “plug” that doesn’t have nearly as much strapping all over my face as the nasal mask did. I slept 6 straight hours, without getting up at all. I can’t remember how long it’s been since I did that. It’s not perfect, as my nostrils were sore this morning, and I can still feel the thing, even hours after it has been out. I’ve always had this odd thing where I could “feel” a hat long after I had taken it off, and this canula is doing the same thing.

I have hope now that I will adjust. The frustration I was feeling with the other face mask was really wearing me out. It’s a good thing I don’t cuss! LOL

I’m calling the Gastroenterologist today, as I want the colonoscopy for my peace of mind. I’m still not satisfied with my elimination situation. We took our kittens to the vet this morning, and I got light headed and had to sit down quickly, because we were standing, waiting for the vet to come in our treatment room. I blame that on my tummy, as I felt better after I excused myself and used their facilities.

I’ve started going out in our yard and working just as soon as it’s daylight, as it’s just too hot later on in the morning. So, my exercise routine is back on track, with walking and Tai Chi every day, plus working for a little while in the yard. By the time I come in around 7:00AM I’m drenched in sweat.

I’m definitely going to have to get my Neurologist to prescribe something to stop this excessive crying I’m doing. I broke out in blubbering at the c-pap office, trying to tell the tech how frustrated I was trying to adjust to the mask. I have learned that this is called emotional lability (more recently called Pseudobulbar affect), and it is a PD side effect. He doesn’t want to change my meds until I get the cpap and elimination situations settled, and that makes sense.

So, some things seem to be getting better, and others aren’t.