Tag Archives: depression

Looks Like I Can Cross Sleep Apnea OFF My List!!

Day by Day with a Movement Disorder Posted on by 4

I have slept longer and waked more refreshed almost every night now for over a week with the dental appliance set to a very comfortable amount of lower jaw extension. I’m not having as much trouble with daytime sleepiness, except for the odd woozy feeling I get after lunch. So, unless something unforeseen happens, I am going to cross Sleep Apnea off my list of problems! That feels so good, to have one less thing going wrong with me.

My neck continues to spasm, so I guess in a way I have traded one problem for another. But I know that will either work itself out, or I can go to my Orthopedist and he will deal with it. If it has not relaxed by Monday, I will make an appointment. I suspect he will give me a prescription for some Physical Therapy. That’s why I stopped going earlier this year when my knee was so painful. I wanted to be sure I had some PT time left, as my insurance only covers 15 trips a year, I think it was. Anyway, I know I have some sessions left, and that will be enough to get this painfully stiff neck relaxed, I’m sure.

I am in an optimistic mood, and have been for some time now. It feels glorious!! Even my elimination seems to be getting back to normal. The combination of Bentyl, the antispasmodic and mild antidepressant, the extra Metamucil capsule, and the Acidophilus, have done the trick. I still have gas problems, as I try to figure out which foods I will have to delete from my diet, but that is so minor a problem compared to what I was dealing with.

So, this is going to be a great day! I just feel it!!

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!

Day One with Sinemet

Day by Day with a Movement Disorder Posted on by 6

Yesterday was the first full day of taking Sinemet again, as well as the Requip and Zelepar I was already on. I also had the Lodosyn and Sucralfate I requested from the ER doc, so that the Sinemet had a better chance of not making me so nauseated, the way it did last year. I started the morning hardly able to feed myself or walk, but ended the day almost back to my normal state. That was a huge relief, to say the least!!!

I also talked to my Gastroenterologist last night, but without any real conclusion to my gas and belching problem, or my elimination difficulties. He basically just asked me a lot of questions, most of which I could not give him any clear cut answer to, and told me to go on and make an appointment with him. I told him about the ER trip, and how I had been delaying my Neuro appointment, waiting for a diagnosis. He said to go on and make the Neurologist appointment, so I’ll do that today. The fact that he has taken so long going over all the diary I gave him, plus his obvious quandary as to what is going on, leads me to think that a serious diagnosis is not jumping out at him as likely. That is what I’m going to assume, anyway.

The comical part of all this was trying to figure out a schedule to add in three more meds, taking into account all the restrictions on timing and eating and nearness to other meds that each one has. I finally wrote out today’s schedule, and I’m taking one or more medicines today at 5AM, 6, 7:30, 9, 11, 12, 1:15, 3, 5, 6:30, and 8PM! And that doesn’t count the Myralax that goes on my cereal or the glycerin suppositories I use! You should see the size of my pill boxes!! Oops, my timer just went off…. time to go take medicine LOL!

Well, I’m back. I just took the Sucralfate, a hog pill that I had trouble swallowing yesterday. Last night we cut it in half, but I still choked on it, because it’s so dry going down. So, this morning I soaked the two halves in a tablespoon of water, and swallowed that. That was much easier, although I can still feel the dry scratchiness down my throat. That’s one of my new stomach protector meds, so I have to take it, uncomfortable or not.

Each day is a new adventure with this PD, with some days being hopeful and others being miserable. Thank goodness I don’t often get as down as I was Sunday night. I thank God for that!! And, I thank you for caring enough to say an encouraging word, too, as I surely need it.

Waiting, But Not So Patiently

Day by Day with a Movement Disorder Posted on by 8

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

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.

Startle Reflex Does Me IN!!

Day by Day with a Movement Disorder Posted on by 6

Have you ever seen a small baby startle? Their whole body is involved, with arms and legs flailing wildly, looking like they can almost jump straight up off the table. Well, yesterday, I looked like that, and it was a very upsetting episode.

I’ve always been easily startled, so up until recently, I had not made the connection with my increased jumpiness and my PD. I’ve been attributing it to my insomnia. After reading about other PWP on the ParkinsonLikeMe site, I’ve come to realize that this phenomena is a fairly common PD symptom.

We were just finishing up eating at our favorite Mexican restaurant, when the people behind us must have been celebrating someone’s birthday. Without any warning to me, because I had my back to them, the waiters had gathered at their booth and started singing loudly in Spanish. I jumped out of my skin. My heart was racing, and it was all I could do to hold the tears long enough to get out of there. Poor hubby was so angry that he all but threw the money for our meal at them, and he vowed we would never come in there again.

I was so upset, partly from still feeling the effects of such a powerful reaction, but also with myself, because I had reacted that way at all. I couldn’t stop the tears, and remained very depressed the rest of the day. It completely spoiled our day out, and that’s a shame. I can feel the tears welling up, even now as I write about it. Such a simple thing, but it really drove home just how much I have changed.

I read other’s stories, like Dan’s that I posted about today, and I’m ashamed of myself for being depressed over my little problems. But that only makes the depression worse. I can only pray for strength and make myself get up and do … do something … do anything… and not wallow.

Blue Funk Is Now Fading

Day by Day with a Movement Disorder Posted on by  

I don’t seem to be quite as depressed as I was a few days ago, thank goodness. The money part of the estate is finally taken care of, so the only thing left to do is sell Daddy’s car and finish emptying the house of all the furniture and stuff that our DD’s don’t want. I say “only” like that’s not a big deal, but there’s a bunch of stuff to get out of our older DD’s way. We did bring Daddy’s car down to our house yesterday, so at least they can move things out to the garage now that are in their way. We didn’t want to do that while all the construction delivery trucks and workers’ vehicles were going in and out of our yard.

We put Thompson’s Water Seal on the garage floor day before yesterday, and it soaked it up like a sponge. We have to wait until tomorrow for it to be cured, but from the looks of it, we’ll have to put another coat on it before we put anything in the garage. Not that we can use it yet, anyway, as only half of it has been roofed. We’re waiting for the other special order to come, since the builder didn’t order enough of the starter strips for this particular type of shingle. It seems this pattern takes two rows, instead of the standard one, so we have half a roof at the moment. LOL

So many delays have happened with this garage that what would have had me in tears a week ago is now just funny. They don’t get paid until we’re satisfied, so it’s to their advantage to not make all these time consuming mistakes. Go figure.

We bought a pair of trekking poles the other day, as an experiment. The one piece ones are supposed to be better, according to all I could find on the Internet. But it made more sense to try out a cheaper set of adjustable ones that both of us could use at different times, until we see if we like it. Using the walking poles is supposed to be a way to protect the knee, ankle, and hip joints, plus give the upper body a complete workout while you walk. And they are recommended as an excellent exercise tool for PWP.

We’re practicing around the house right now. I’m not sure I am going to be able to use the best possible form with them, as it’s kind of confusing. It involves holding them with a strap around your wrist and then letting go of the grip when the pole goes back, as you grip the other pole as you walk. Trying to keep my feet coordinated with the poles, plus remembering what my hands are doing, all at the same time, is very confusing. But I can definitely hold onto both poles all the time and do them OK. I can already tell that they are going to increase the exercise my upper arms and shoulders get. I’ve been walking with one pound weights every other lap now, for some time, in anticipation of trying these poles. I hope that means I’m ready for them, but I’m in no hurry to try to walk very far with them right now. I’ve learned that slow and easy works better for me.

We managed to salvage enough leftover sheathing and scrap 2×4’s to have a good start on finishing off one inside wall of the garage, plus make some shelving, plus there is a good bit of the siding left over that they were going to take to the dump. We kept that, too, in case we ever have storm damage. I’ve been walking around outside the last few days with one of those magnets on a pole, picking up nails. No telling how long it will take for us to find all of them. With the drought we’re having, it’s not as if we need to be worrying about using the lawn mower in that part of the yard for awhile, so we should have it cleaned up before we need to be concerned with cutting the grass safely. As for cars, we’re still not using the new part of the driveway or going near the garage. Tearing up a tire is just not worth it.

We’re making slow headway with our eBay sales, with over 250 items listed now, so I’m hopeful that I can get back to enjoying reading everybody’s blogs soon. I did manage to skim through Ruth’s blog to see how things were going with her since Mick passed away, and I’m sorry to see that she’s had one problem after another, due to the red tape of their national health care system. The more I read what Marion and Ruth have to say about socialized medicine, the surer I become that I pray we never get it in the USA!!

Since I’m writing this at 2 AM I think it’s safe to say the insomnia is still going strong. I went to bed about 9:30PM, but I was wide awake by 12:30. I tried going back to sleep about 3:00, but didn’t succeed, so I’ve been up since 3:30 with 3 hours sleep for the night. Counting the days until I see that sleep specialist!!

Going Through a Depression Phase

Day by Day with a Movement Disorder Posted on by 8

I have really tried to stay positive about all that’s been happening to me over the last year or so, but I’m not succeeding very well right now. When I went to my Neurologist last time we made a point of telling him that I was crying extremely easily over just about everything. He had a name for it, but it was a mile long, and I forgot what it was. Since he said he didn’t want to change any medicines until after I’ve had the sleep study, there didn’t seem to be any point in pursuing it, as long as we’ve told him about it.

We’ve been waiting to get the garage we’re having built finished. We waited an extra month for the siding and roofing to be special ordered to match the house. Neither one of them is a match – right color, but wrong shapes. And we’re stuck with them. That set me into quite a blue funk for the last few days, but I’m getting over that. It’s just a garage. Sometimes it’s hard to keep perspective about things like that.

We’re still dealing with estate business, so that doesn’t help with my state of mind right now, either.

I started back on the glycerin suppositories today, as I have gradually had more and more trouble with bowels again. Just as before, there’s nothing that would make me consider myself to be constipated, but my muscles just don’t push hard enough. They took the Zelnorm off the market that dealt with that problem for me before. So I’m planning on going back on the Bowel Retraining regimen.

So, with the insomnia continuing, the bowel situation flaring up again, and just generally too much going on, I’ve had better days.

Losing It

Day by Day with a Movement Disorder Posted on by 8

We closed on the house last Thursday, so now one daughter owns Daddy’s house, and the other is getting a nice inheritance. It was a very nerve racking event, because the mortgage lady has from day one done a very sloppy job. She has waited until the last minute to tell us about all kinds of things we had to rush around and get done. She’s 7 months pregnant, and our DD is afraid if we complain to her boss she will have problems with the baby. If it weren’t for DD being so worried about that, we’d be trying to get some of her commission returned to us, as she had to be the worst business person we’ve ever had to deal with.

Anyway, we went to the bank today and took care of more of the estate business, and I realized after we got there that I had forgotten to bring the mortgage payment check. In fact, I hadn’t even thought about bringing it, and I couldn’t remember what I had done with it after we got home late Thursday night. I remember telling my DH where I put it when we got home, but he couldn’t remember, either. When we came home from the bank, we spent a very hectic afternoon tearing the house apart, looking for it. I was a complete blank, with no idea what the check even looked like. Have you ever tried looking for something when you didn’t even know if it was in an envelope or not?? I cried a lot, prayed a lot, and finally gave up.

I figured if I started cleaning up, I might find it, and I finally did, thanks to God’s help. It wasn’t in a logical place at all. For some reason I had moved it from where I was just sure I had put it to begin with. This whole episode was very scary, and I’ve told DH that as far as I’m concerned his Power of Attorney just started. I’ve always been the one to deal with all business matters, but I can’t trust myself any more.

Mama had the Alzheimer’s type of Parkinson’s, and I’m seeing more and more of it in myself. It’s very depressing to watch yourself go blank. I can only hope that it will turn out to be the result of my insomnia, not Senile Parkinson’s Disease.

Can’t Make Up My Mind

Day by Day with a Movement Disorder Posted on by 6

I’ve been going back and forth since Friday, trying to decide whether or not to join the St. Vincent’s Health facility. We toured it Friday afternoon, and the place is really impressive. But when I found out the price, and now that I’m certain that my DH is not going to join, I’m just not sure what to do. If he had joined, I wouldn’t be feeling guilty about all the time it’s going to take to drive there and back, plus the time I’m there, too.

I can justify the cost, if I choose to go, as just being another expensive medicine. If the doctor were to prescribe something that costs $65 a month, and he really thought it would make a positive impact on my Quality of Life, I’d pay for it, without hesitation. So, even though that is a lot of money, I can’t decide not to join just based on cost.

Being dependent on DH to drive me there, wait on me, and then drive home, is very depressing. I’m sure I would join if I could drive myself there, but that’s just not going to happen. It would mean driving on Highway 280, the most congested road in Alabama.

When I had said I was going to join, DH let it slip that he really wasn’t enjoying going walking in the mornings. He’s a night person, so getting up that early is not what he wants to do. He’s been keeping that to himself, because he wanted me to get the exercise. I feel bad that I’ve been hauling him out of bed all this time, when he really didn’t want to, but it’s just like him to put my interests over his.

So now my dilemma is that I don’t want to put him out again, by going so far from home to exercise. I think if it were just exercise equipment, I wouldn’t have any trouble saying no. But there are Yoga and Pilates classes, plus Aquatic classes for Arthritis folks, a shallow therapy pool, a large jacuzzi, a sauna, and a steam room. Hmmmm…. those sound so soothing on aching muscles.

I can’t count how many times I’ve changed my mind this weekend LOL!! This whole wishy washy episode has really brought home to me how very upset I am that I have to depend on somebody else to help me do things I used to be able to do by myself. I don’t like it one bit!!