Unexpected Aftermath of EEG Test - Still on Clonazapam

I had an EEG back when my own Neuro was trying to decide what was wrong with me, so I knew what to expect. Well, I thought I knew what to expect. My "good" left foot has been extremely painful and difficult to walk on for the last few days. At first I blamed it on all the walking we did at the cemetery in my Sketchers, which I now use as Sunday shoes. But I don't think that was the culprit.

I was on the exam table for about 45 minutes, jerking and shaking the whole time. I can't lay down flat like that without setting off back spasms, so I put my good knee up and had my bare foot pressed against the thin pad of the exam table. I must have been pushing down on my foot a lot harder than I realized, in an effort to bear the discomfort of all the jerking. It is gradually improving, but I noticed yesterday that my thigh is also aching. My foot was hurting so badly that I had not even noticed the leg. So, I've decided that's what is wrong with my foot, rather than my shoes. Those are the only unclunky looking shoes I have been able to wear, so I am glad that they probably did not cause my good leg to give me so much trouble.

You are supposed to go up with the good and down with the bad leg, so it was comical yesterday at church trying to figure out which foot to lead with. One hurt, and the other shook! LOL I decided it was safer to lead with the painful one, rather than the jerky one. At least I was less likely to fall.

Speaking of shaking, the Clonazapam may be helping some, particularly with my mouth, but I am staying in a stupor, sleeping through my morning pill alarm, and just generally fuzzed out. He says it will go away --- I sure hope so. Otherwise, I won't be able to take this med.

I can't see any improvement in my foot or my shoulder jerks, though. I'm waiting now to hear about my MRI appointment. I am going to call them today, since we still have not heard from them.

Patience ... still haven't learned it.

Two Ruptured Cervical Disks - No Wonder I'm Hurting!

I talked with my Orthopedist's PA the other day, and she confirmed what I already knew. The disks are bulging on the two cervical vertebrae that are degenerating, and that's what is causing the pain and stiffness. She doesn't want to make an anesthesiologist appointment to get an epidural there until I have a chance to talk to my Neurologist. I see him Wednesday. I did ask that she talk to my Neuro's nurse, rather than expect me to relay messages. It seems that the ER did not send any information to him about my time in the ER in September, when I had the horrible drug interaction with a steroid shot. So his nurse was completely surprised to hear I had a bad reaction.

So, we'll be going to the hospital to sign the release form to get the records to take to my Neuro.

I continue to be concerned and in prayer for several Parkie buddies on the PatientsLikeMe site, who have been diagnosed with skin cancers. One has Melanoma, and the other has Squamous Cell Cancer. Both were caught early, with every reason to believe they will be just fine. We are all praying for their recovery.

There is another woman on there who's brother also has PD, who had unrelated surgery, and to quote her - "his brain is mush." She said he has already tried to leave the hospital. When I thought I was going to have to have surgery back a few months ago, I learned all kinds of scary things about how difficult it is for PWP to have any kind of anesthesia without serious side effects. Also, it is very difficult to get hospitals to keep the PD meds coming on time. And that can mean the difference between being mobile and thinking normally, and not.

I wore my new "Sunday" shoes today, and I really like them. They help with my balance, they feel good on, and they are unobtrusive. I doubt if anyone has even noticed that I'm not wearing dress shoes. I don't feel the least bit self conscious in them, so if someone has noticed them - I don't care.

I am having one problem, though, that came unexpectedly. Last night I noticed a red itchy place on my wrist where the back of the Timex watch is against my skin. I had noticed that the skin was getting slick and shiny there a couple of weeks ago, so I started taking it off at night to go to sleep. Evidently I didn't heed the warning in time, as I now have a nice round ringworm there. It's been holding too much moisture against my skin, as it is fairly tight. It's a big man size watch, and not particularly comfortable, but I was willing to tolerate it, because it is so helpful. I may end up taking the band off, and just keeping it in my pocket.

I have not been able to do much exercising for the last month, partly because of my neck, but mostly because my DH over did it and his Sciatica is acting up again. I've been so busy working on the requests on our Plush Memories blog that I have been sitting still more than I probably should be. I've not been doing the Tai Chi, either. I know I really need to get back with a scheduled exercise program, the way I was before.

So, some things improve, while other new aggravations begin. Not so different than what happens to everyone, right?

Impressions are Made

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

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.

Waiting, But Not So Patiently

My Gastroenterologist is a very busy, very dedicated man, for whom I have the utmost respect. I know for a fact that he works long hours, because one of the times I went to his office lately, they couldn't find my chart. Then the nurse pulled it out of a big duffel bag full of files, and told me those were the ones Dr. B had taken home that night to work on. He had been reviewing my whole chart, hoping to find a pattern in my symptoms that would help him decide on a course of action. I had no idea that doctors took their work home with them. Considering they get calls in the night for emergencies, I always assumed that they tried to leave their work behind as much as possible when they went home.

So, I'm trying to be patient as I wait for him to call me back. I reported in to his nurse last week to let her know that the cleaning out he had me do with the GoLytely did not stop my problems with elimination or with the bloating and gas. She told me then to check back this week, after I had stopped the Amitiza, to see if that would help. Well, I called her Tuesday, and left a message that stopping the Amitiza did not change the problems. I didn't hear from her, so I called again late Wednesday afternoon, as she is usually so good about returning calls. She said then that Dr. B was going to call me back that afternoon, himself. So, I stayed close to home, with the phone on ready. No phone call. Well, like I said, I know he's a very busy man, so I waited until late Friday to call his nurse again, thinking maybe there had been a mixup on who was supposed to talk to me. She called me back just a few minutes later to say that Dr. B had just plain forgotten, and was very apologetic, and would definitely call me that evening. Still no phone call. I can't imagine him calling me on the weekend, but who knows.

I know I need to work on patience, as it is a virtue I really need more of. The old joke is that you should be careful when you pray for more patience, as the way to get patience is to deal with adversity. I guess my "adversity" right now is having to deal with these digestive related problems for over a year now, trying one thing after another, as the doctor ordered, with no relief yet. I'm definitely showing signs of depression, and I blame much of it on this unresolved problem.

There's no doubt in my mind that I am under medicated right now, as far as the Parkinson's meds are concerned. But there's no point in going back to the Neuro until I have overcome my difficulties with getting used to the CPAP, and until something definite has been accomplished with this digestive situation. As it is, I'm changing two things at once, which is not good science. In order to be sure what the cause and effect is on any treatment change, there needs to be only one variable at a time.

I wrote some time ago about how dealing with Parkinson's is like being in a clinical trial with one participant. I still think that is an accurate assessment of what it's like. After reading lots of comments and stories from other PWP, it is apparently true for most, if not all, Parkies. The doctors can only try things, never knowing exactly how any one patient is going to react to the meds, or their side effects.

And the depressing thing is, none of these meds work to improve the underlying brain deterioration. They only work on the symptoms. So far, no medicine has been proved to actually slow down or halt the progression of the PD itself, and there's not even a whisper yet of anything that can repair the damage already done, with the exception of claims made for stem cell therapy.

I do have one positive piece of information to report, though, and I try hard to end on a positive note. I mope about all this enough. Since brain fog is a problem I've had for a long time now, I was very curious when someone on the PatientsLikeMe site mentioned the idea of using brain training to improve their mental abilities. That started me doing some research, and led me to the MyBrainTrainer site. It was not very expensive to join for three months, and I figured I could give it a try for that long, and then decide if it were worth taking a year's subscription. They have a series of online brain exercises, set up like miniature games, that you work through on a planned schedule. I'm on Day 12 of the 21 day basic training part right now. My scores are consistently falling in the 25 to 29th percentile of all their participants in my age range. Not anything to brag about, that's for sure. BUT, here's the good part. The brain fog is beginning to lift, just a little. I'm not groping blankly for answers to questions on the Smarter that a Fifth Grader show nearly as often. I find I know the answers more often on Jeopardy, too, and I don't feel nearly as frustrated by watching these shows as I was a few months ago.

So is the BrainTrainer the reason, or the CPAP machine? I have no idea. Again, changing more than one thing at a time makes such a conclusion impossible. But I don't care, all I know is that I'm thinking better, even as my body is slowing down again from not having a strong enough PD med dosage in my system. I'm very grateful for that, and I cling to any positive outcomes as I try to work through this depressed stage I'm in.

Trying a Different C-PAP Mask

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.