Day by Day with Parkinson's and Peripheral Neuropathy

I was diagnosed with Parkinson's Disease and Peripheral Neuropathy in 2006, but my symptoms seemed to take a turn in a different direction in late 2007. The current diagnosis is Essential Myoclonus. You will find record here of a my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, and no telling what else!

Sunday, December 16, 2007

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?

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Thursday, December 13, 2007

Sitting MRI and a Full Night's Sleep

Well, I had my Standing MRI on my neck yesterday. I was having some strong tremors when I got there, so the technician changed it to a Sitting MRI! LOL!! He also put a lightly restraining halo on my head, and I managed to stay still through the whole 30 minutes. He said I did just fine.

Of course I won't find out anything until next week probably. I'm guessing that he will prescribe Physical Therapy again, particularly since I had such a terrible reaction to the Celestone steroid shot for my poison ivy. It depends on just how much damage he sees, I guess.

I have my Neurologist appointment next week, so I will be talking to him about how I should proceed. He may have me stop taking the Zelepar, as that seems to be the med that gives me the most interaction warnings. It does not play well with others!

I have an appointment with my Sleep Apnea Specialist next week, too. He should be dismissing me, hopefully. I am sleeping a full 8 hours almost every night now. And it has made a miraculous difference in my daytime sleeping. Actually, I'm not having ANY daytime sleeping problems, now. I can ride in the car for hours now, and still carry on a conversation with my DH. It's been years since I could do that. No more jerking awake at the computer from a few seconds of sound sleep out of nowhere. And, I am still on the Requip that gets blamed for this side effect. It wasn't the medicine after all for me. I was just sleep deprived!

It's so gratifying to see improvement even in one area of my health. And I have high hopes that Dr. J will fix the pain and stiffness in my neck.

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Sunday, December 09, 2007

Neck Pain and Tremors Causing Problems

I'm having two main problems from the Parkinson's right now - my very stiff and painful neck, and the much increased tremors, particularly in my right foot.

I'm sleeping with a very soft neck pillow, the kind that look like a C, and I keep it behind my neck while I sit at the computer, too. That helps me get to sleep and cuts down on the pain of just holding my head up. As the day goes on, the pain is getting worse and worse.

I am waiting to hear from my Orthopedist now about a standing MRI appointment. Hubby has Jury Duty next week, so that means I will have to wait longer to get it done. Can't be helped, but it's frustrating. He had to ask for a deferral back when we were taking care of Daddy, so he can't very well ask for another one because he is taking care of me. There is absolutely no way I could drive myself to the big city, as long as it's been since I've driven at all, even though I am no longer having the sudden sleep attacks. Maybe, if he is lucky, he won't have to serve for long, and I can get it done toward the end of this week. I sure hope so. The Methacarbamol and Mobic aren't helping enough to warrant taking the pills, so I quit taking them.

I've tried to continue with as much exercise as possible, but DH hurt his back again several weeks ago, and his sciatic nerve is acting up. He hasn't felt like going to the track, so I haven't been getting enough exercise lately. I am still working out in the yard the best I can, but it makes my neck hurt worse.

I'm also having considerably more problems due to tremors. For the first year of PD I didn't have any tremors at all. I was beginning to have small ones on Sundays mostly, while we were listening to the sermon. I finally decided that it was the uncomfortable pews, being too still too long, and being cold, all working together to stress my muscles. But that was a very mild nuisance tremor.

Since I had the steroid interaction that sent me to the ER, however, the tremor in my right leg and foot have been so strong that it makes walking and standing much more difficult. It still comes and goes, but when I get the least bit tired, as I do when I walk very much, that leg starts dancing a jig all on its own. I am having more problems with balance because of it, and I am beginning to experience what is called freezing. When I stand up, I have to kind of wait before I can get that pesky right foot to make up its mind to move where I want it to, it's so busy moving where it wants to.

One thing's for sure, I look like I have Parkinson's now, where I didn't until recently. Even my lips, tongue, and eyebrows are beginning to quiver. We had our portraits made the other day to give to our children for Christmas, and it was all I could do to hold the poses long enough to get a good picture. My face behaved, but not my leg. It took every bit of will power I had to make my leg be still. If I hold my breath and really concentrate, I can stop the tremors momentarily, thank goodness. I had to do that to get the X-rays on my neck done a couple of weeks ago, too.

So, things have been a little difficult lately, but I am still managing OK. I've been listing a lot on eBay, and we have had some good sales there. I've also been concentrating on trying to help as many people as I can on my Plush Memories blog. I've managed to find several lost lovies for people, and some of my blog readers there have found a few more. And, there have been a few times that we had the lovey they were looking for in stock, so I've made a few sales, and made some folks very happy all at the same time. That's what makes selling the plush toys so much fun.

We are still going to Estate Sales, but this time of year there usually aren't as many on a given Friday. That's OK, because I really can't manage more than a few anyway, as I tire out and hurt too much to go to very many. So, we have been doing a little bit of Estate Sale hunting and a little bit of Christmas shopping on Fridays. The only thing we absolutely have to go to stores for is all the Stocking Stuffer odds and ends that we give our children and grandchildren every year. And this year, we have been buying things for their stockings all year long, which is a blessing.

Thank goodness for Internet shopping! I've been buying most of our gifts online for years, but this year it has been a blessing. The black pair of Skechers came the other day, and I wore them to get our portraits made. They feel wonderful, and they do improve may stability much more than the Sunday shoes I have been wearing. Our daughters wear the same size shoes I do, so looks like they will be getting some hand me down shoes.

So, I keep going, making changes as I must.

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Thursday, December 06, 2007

I've Been Busy, Busy, Busy!!!

I've been so busy I hadn't even realized how long it had been since I posted here. This is our busy time of year for selling on eBay, so I've been spending a lot of time taking pictures, writing descriptions, and packing items to ship. Hubby helps a lot with the packing, and he goes to the PO with them, but the photography and anything computer related is up to me.

I also have been very busy on the Plush Memories blog, because so many people have written wanting help finding their child's lost lovey. It feels so good to actually help someone, and I have had some successes lately. But right now, I have something like 70 or so requests that I haven't posted yet. Every time I open my email, there are a few more requests. It's almost like being Santa, getting all the letters. But I'm not magic, and there are only so many hours in the day that I can give to it.

I am still sleeping a good 7 to 8 hours a night now. My alarm watch is waking me up at 5:00AM most mornings now. That's made a huge difference in how much energy I have, and I'm not even dropping off to sleep in the car like I had been. I haven't had the nerve to drive again, though. I have mentioned it to hubby, but he just doesn't answer me. Not so sure he thinks it's a good idea.

The elimination problems have improved slowly, and the Bentyl, prune juice, extra Metamucil, and the Glycolax are working. I bought a couple of books about IBS, and I'm trying to change some more of my eating habits, too. I had already made some huge changes over the last few years, thanks to the GERD. But now, my diet is even more restricted than ever. I eat the forbidden foods from time to time, like pizza, but I do it knowing that I can expect to have consequences. And I give in to the chocolate craving every once in awhile, as it's the best cure for being upset that I have ever found. Yes, I am addicted to chocolate!!

Wearing the Skechers shoes helped last Sunday, and I was not anywhere near as unstable in them as I have been in my regular Sunday shoes. They're not the kind of shoes anyone would normally wear with dress up clothes, but they are unobtrusive.

I'm to have a stand up MRI soon for my neck, as the pain and stiffness have not gone away at all. I'm waiting right now for my insurance to approve the test. The muscle relaxer and anti-inflammatory have not made a dent in my neck situation. The X-rays show the degenerated disks, and my Orthopedist knows about the problem I had with the Celestone. He said I may have to go off the Zelepar long enough to have the epidural in my cervical vertebrae. He said I would need to talk to the Anesthetist and work that out with him. Sounds fine to me!!!! If the epidural doesn't work, the only thing left would be some form of surgery, and that I will avoid as long as possible.

Hubby's sciatic nerve problem has flared up again, so he doesn't feel like going to the track to walk. So I've been getting most of my exercise by working in the yard. The Lasagna Compost is still growing, one pile of wood chips, fertilizer, kitchen scraps, and dirt at a time. It sure is tempting to turn the pile to see if it's working, but I have resisted the urge so far. I work in the yard several days a week for over an hour, so that's good.

So, I think I have more positives going on than negatives, and that means today is a good day!!!!

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Tuesday, November 13, 2007

My Pharmacist wears an S under his lab coat!!

Yep, as far as I'm concerned, he's Superman, ready at any moment to rescue this damsel from danger. I went to my Orthopedist today to get some relief from the painful neck spasms I've had for the last two weeks. He prescribed the muscle relaxer, Flexeril, which I have taken before, long before I was diagnosed with PD.

We dropped the prescription off on our way home, and DH went back to get it about an hour later. He came home with Methocarbamol, not Flexeril. Sure enough, I would have had a serious drug interaction with Flexeril and my PD meds. My pharmacist called the doctor and they found a muscle relaxant I could take, all before hubby ever got there to pick it up.

I think that makes three times in the last few months that my fantastic pharmacist has caught medicine errors that my doctors have made.

We live in a very small rural town, and we went without a pharmacist for quite a few years. When this one opened up shop, I told him the first time I went in there that he could depend on us to patronize his shop, even though we realized that we could buy cheaper at Wal-Mart or the chain store pharmacies. He's not open at night, or on Saturdays and Sundays, but I wouldn't trade him for anything. He more than pays for his higher prices with his service and the fact that we are close enough to walk to his store if we had to. The franchise pharmacies would require an almost hour round trip, which is no fun if you are miserable. Sure, there have been times when we had no choice but to patronize the big boys on the weekend or at night, but we try our best to give our local fellow as much business as we can.

I've said it before, and I'll probably say it again. Everyone should keep all their prescriptions medicines on file with one pharmacist, and make sure that pharmacist cares about you, and not just about making money!!

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Saturday, November 03, 2007

Still Having Problems, But I'm Sleeping Longer!

I have managed to "stay in bed" for over 7 hours now 4 nights in a row. I wish I could say that means I was asleep the whole time, but that hasn't happened yet. It is still a considerable improvement, however. The last pill I take at night is the Bentyl, which is supposed to calm my colon and prevent the spasms that have been plaguing me for so long. It is an antidepressant, so I suspect that may be at least part of the reason I've been able to delay getting up as well as I have been. I continue to wear the TAP each night, so maybe it's a combination of both of them. Whatever it is, I'm thankful for it.

I've spent the last three days trying to overcome the stiffest neck I've ever had in my life. It started Wednesday evening, out of nowhere. I could feel the neck muscles all tensed up, and it was impossible for me to turn either way more than a couple of degrees. I tried the hot pad, plus took some Tylenol, and hoped I would sleep it off. I also did not wear the TAP that night, thinking that might make it worse. It was still extremely tight and painful all day Thursday, but I did go back to wearing the TAP. Nothing seemed to make it go away. It was considerably better by Friday, although I did take some Arthritis Strength Tylenol to get to sleep. Now, I am able to turn my head both ways maybe 45 degrees each way before the pain stops me.

I'm not really sure where this spasm came from. I did work out in the yard Wednesday more than I have been, and I could have over done it there. Or, it could be that I have turned the TAP screw past what my jaw can handle. Just in case it was the TAP, I backed up several turns on it to give my jaw muscles a rest.

I did get my flu shot this week, with no side effects at all. And I made sure the nurse put the information in my records about Celestone causing me to have such a horrible Parkinson's episode. I have not yet returned to the state I was in before the steroid shot, so I guess I won't be getting back to that point. It's been too long now. If I were going to recover completely, I would have by now.

I am still having those weird spaced out episodes after lunch mostly. I've tried eating meat, not eating meat, staying away from any protein, eating normally, eating things I'm not supposed to eat, like pizza, and eating very carefully selected IBS foods. Nothing seems to be an obvious trigger, so I'm left to think it is the medicine itself doing it. That would be the noon dose of Levadopa/Carbidopa (Sinemet). I'm not sure why I have more trouble with the noon dose, as I take this med with all three meals. It remains a puzzle.

I've been working hard on several computer projects lately, so I'm behind on listing items on eBay. I have got to get that done today, though, as we are being squished by all the bags of plush toys packed into our two spare bedrooms. LOL We buy them faster than I can sell them!!

So, I guess it's time to quit blogging, and start taking some photos!!

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Thursday, October 11, 2007

Update on Dental Appliance for Sleep Apnea

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!

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Friday, October 05, 2007

Drug Interaction Still Causing Problems

I went to the Gastroenterologist Wednesday afternoon, and he did X-rays of my abdomen to determine if I was as constipated as he thought I would be, based on my symptoms. He was surprised to find that nothing in my colon was hard or compacted. After examining me, he has come to the conclusion that my problem is caused by spasms of the digestive tract, rather than weak muscles, as he had been telling me it was. So, now he thinks my trouble is exactly the opposite of what he had thought previously!! He prescribed Triavil, which relaxes the colon muscles, and he said I should feel much better by Monday.

I've learned my lesson though, so I specifically asked him if he was sure I could take this med with my Parkinson's meds. He said he did not think this would be a problem, but to ask my pharmacist. Full of hope that he had found a way to stop my very uncomfortable situation, I called our drugstore on the way home to be sure he had it in stock. But, when hubby came back from the drugstore, he didn't bring in the prescription bag. He said the pharmacist said his computer all but crashed when he put in the medicine, it produced such a strong warning that this was a dangerous combination with my other PD meds!!

At first I handled the news stoically, but later on that evening I went through a rough time of being very depressed, with lots of crying. I called my doctor's nurse first thing Thursday morning to let her know I couldn't take it, and to remind her that he would see Selegiline listed in the interaction information, rather than Zelepar, which is just a dissolving form of Selegiline. I think that must be why he didn't realize I couldn't take it.

Anyhow, I haven't heard back from him yet, so DH and I decided it was time to take matters in our own hands. We went enzyme, herb, and spice shopping, as I have been doing some research on my own about Irritable Bowel Syndrome (IBS), and I found some things that should help, without causing problems.

Yesterday, I started taking Turmeric, St. John's Wort, and Acidophilus capsules. DH's Oncologist has had him on Turmeric ever since he had colon cancer, and his doctor had already suggested I use it. We had our usual Date Day today, and I continued to belch a lot all day, but did not have any nausea at all, or my usual sensation as if my food was sitting at the top of my throat all day. I'm encouraged that I will find a way to calm my system down and get things back to closer to normal, whether my Gastro can find a medicine I can take or not.

I'm still very wobbly, though, so I used the cane just about everywhere we went today, and I'm using it in the house tonight, too. It may be that it's just going to take awhile to recover from the really bad state I was in Sunday, plus I may still have some of the Cortisol in my system. I'll have to see if I can find something about how long it stays in the system after getting an injection. Or, it may be that the St. John's Wort, added to my other PD meds, is giving me an overdose of Levadopa.

That's what makes figuring this all out so difficult, as too much PD meds makes for jerky movements, called Dyskinesia. If you've seen Michael J. Fox jerking around, you've seen it. When PWP have been on meds for a long time their systems process the Levadopa in a very unpredictable way, and you see these wild jerking movements. But early on, if the meds aren't strong enough, you see tremors. It's hard for me to tell if my wobbliness is tremor or jerking, so I can't tell, based on that, if I'm getting too little or too much Levadopa. My hands are only shaking ever so slightly, which makes me think I'm not getting too much. My Neuro will know when he sees me.

By then I should have heard from my Gastro doctor, and I'll know if the herbs are going to do any good or cause any problems. I will be doing more research, too, to be sure there are no contraindications of these OTC with my prescriptions.

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Sunday, September 30, 2007

Walking on Jello

The saga of drug interactions continues, evidently. I had a Celestone shot on Thursday to get the poison ivy under control, as a steroid shot always does the trick for me. My regular doctor has given these to me several times in the last few years, so I was not surprised when I woke up very nervous Friday. That's pretty much par for the course, plus they make it hard for me to sleep, too. So, I tolerated the shakiness Friday, and we continued with our Estate Sale hunting and went to see our younger DD for an overnight stay.

By Saturday morning I was even shakier, but we had a long way to drive home. I kept the way I was feeling to myself, figuring it would go away, and I did feel better after we ate a big breakfast. But, this morning, I was in really bad shape. I was shaking all over and holding on to furniture and the walls to get around. When my hubby got up several hours after me, I was worse. So, I called the Neurologist's answering service and the doctor on call promptly called me back. After listening to all this, he told me to go to the ER. He said he was concerned it was an infection (I didn't think so, but?) and they would be able to give me something to stop the tremors. So, we were off for the hour long drive to get to the ER, with DH trying his best not to show just how worried he was about me, and me trying my best to be still.

They took me right away, but it still took quite awhile to get the results from all the blood work they did. They did not find signs of any infection, and concluded, just as I had, that the steroid shot had precipitated this acceleration of my symptoms. So, armed with four prescriptions and orders to see my Neurologist this week, they sent me home.

So, at least for now, I'm back on Sinemet, which is the "Gold Standard" drug for Parkinson's. Since I was so nauseated with it when I took it for the Sinemet Challenge that confirmed my Parkinson's diagnosis, I had asked the ER doctor to also give me a prescription for Lodosyn, Carafate, and Phenergan. This is where my journal of everything that has happened since my diagnosis came in handy. I was able to show him in my journal that this is what my own Neurologist had put me on way back in September of 2006, when I got so nauseated with the Sinemet.

So, I'm typing this with a fairly steady hand, with all these extra meds in my system. I have an appointment tomorrow with my Gastroenterologist to find out what he thinks is going on with my digestive tract, and as soon as I know what is going on in that area, I will make an appointment to see my Neurologist.

This whole experience has been very upsetting to say the least, not only for me, but for DH as well. I hate it that he's having to take care of me the way he's had to. I hate it that I couldn't stop myself from shaking. I hate it that the ER guard came immediately, being so very solicitous, wanting to get me a wheelchair, as I was obviously so feeble looking, wobbly cane and all. I hate being this way. Today I got a glimpse of what the future holds. I hate it.

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Wednesday, September 26, 2007

Can't Take Meds I Used to Take

I've been working out in the yard a good bit lately, as part of my exercise. I've made some headway with our yard, but I've also come in contact with poison ivy somewhere along the way. I am extremely allergic to it, so I'm broken out over a large part of my upper torso, front and back, on my neck and face, and even in my hair. I have no idea how that happened. We have new cats outside, too, and I may have picked it up cuddling them.

So, I pulled out my trusty Benadryl, in addition to the topical anti-itch meds I always have on hand. Benadryl makes me sleepy, so during the day I've always used something like non-drowsy formula Sudafed. When DH went to the store he couldn't find the exact same Sudafed I was about out of, so he took what appeared to be a similar medicine to the Pharmacist to make sure it was OK for me to take it. He made sure he told her I had Parkinson's, and she said it would be fine.

I hadn't even thought about checking for PD drug interactions, so I'm glad hubby did. Particularly since I did take one dose of the 12 hour Sudafed with Pseudophedrine Hydrochloride in it this morning, and I've felt yucky all day long today. When I looked on the new box to see how many to take, despite the fact that DH had asked the pharmacist if it was OK, there in fine print, among the list of conditions that made using it unsafe, was - you guessed it -- Parkinson's. The same warning was on my old box of meds, too, and I hadn't even thought to look. That's BAD.

So, I called our local Pharmacist to double check, and sure enough, I can't take it. DH has gone there now to get Chlorotrimiton, which has nothing but an antihistamine. It doesn't have any decongestant in it. My Zelepar is in the MAO class of drugs, so I have to pay attention to things like that.

As careful as I am to check on drug interactions with prescriptions, it never occurred to me to check out these over the counter meds, as I've taken this combination for poison ivy for years. BAD GIRL, BAD GIRL!!

I've hopefully learned my lesson, though, and will not let old habits take over again. Cause the old gray mare ain't what she used to be!!

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Wednesday, August 15, 2007

No Surgery After All!! WHEW!!

I made the rounds of my doctors again yesterday, and the specialist my Gastroenterologist sent me to does not believe that my situation warrants surgery at this time. He would rather I continue to use all of Dr. B's arsenal of Bowel Retraining routines - glycerin suppositories daily, Milk of Magnesia every couple of days, bran cereal and prune juice daily, Miralax, and Amitiza. He also went over the list of what I can't eat again, and it seems to get longer each time I see him.

I'm not allowed to have

soft drinks of any kind
chocolate
nuts, particularly peanuts
any dairy products at all
cruciferous vegetables, such as broccoli or cabbage
beans
tomatoes
coffee
caffeine of any kind

And no telling what else that I can't think of right now.

It's hard to believe it takes all that to keep my system from bloating, but it does. Zelnorm was much better than Amitiza at producing a stronger muscle contraction through the digestive tract, but I'll just have to make do with the Amitiza, and hope they find a way to modify the Zelnorm and get it back on the market.

There's now an agreement among the doctors that my elimination problem is due by and large to the weakness of the digestive tract muscles, caused by the Parkinson's, rather than the anatomical problem that was recently discovered.

I liked this new doctor. He explained things very well, and took a lot of time with me. He explained why he thought surgery would be unlikely to have much of a chance of improving things at this time, and he also gave me some idea of what to watch out for, in case the problem worsened. I will see him again in 6 months, assuming all goes well.

I saw Dr. B, my Gastroenterologist, too, and he wants me to use the full complement of Bowel Retraining strategies for a week. If I am still bloated and having problems with gas and elimination, he will do another colonoscopy. I had one a year ago, with no polyps or other problems, so he really doesn't expect to find anything. But he knows I'm concerned, and the colonoscopy will ease my mind.

So, with no surgery in the near future, I can stop spending so much time on the computer, reading everything I could find about this problem. I really was beginning to obsess over it, but I learned a lot. I was extremely pleased that the surgeon pulled out his huge PDR and looked up the interaction between Zelepar and Demerol as soon as I mentioned I had read about it. He agreed that I could not have the Demerol if I had the surgery. I will DEFINITELY have to get something in my wallet TODAY to that effect. If I somehow ended up in an emergency room, needing immediate surgery, my own meds could possibly kill me!! So, doing the research was worth it, if only for learning that one piece of information.

Hopefully this is the last time for a long time that I need to discuss my bowel habits LOL!! I'm sure anyone taking the time to read my posts is tired of hearing about it, as I'm tired of having to deal with it, too.

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Tuesday, August 07, 2007

6 Doctor Visits in 6 Days!!

We have kept the roads hot this week, going from one doctor to another, even seeing two doctors twice. But at least I have a better idea of what's going on with several different problems I have been having. I saw my Gastroenterologist twice, and now he has me scheduled to see the doctor he wants me to use for the surgery I need to correct the problem with my digestive system. I was really upset about having to have surgery at a hospital I don't like, if my own doctor performed it. Now I can quit stewing about that. Dr. B solved that problem by telling me that he coordinates for this surgery with this particular doctor, who uses the hospital I like.

I saw the Sleep Specialist twice, too. The nights at the Sleep Study were not pleasant, as I was very uncomfortable in the bed, and the thing they had in my nose felt horrible. Halfway through the night, I got so upset about how miserable I felt that they changed to a different type of mask, and I got through the rest of the night fairly well. Tonight will be my first night to sleep at home with the C-Pap. Wish me luck!!

The tick bite looked really fierce for a few days and itched something awful, but now that I've been on the antibiotics since Friday, my left knee no longer looks like it's getting worse, and has stopped itching.

The Amitiza has turned out to be a good substitute for the Zelnorm that was taken off the market. I'm very pleased with how much it is helping with the constipation problems.

I've been reading everything I could get my hands on about the surgery I am to have, and I discovered that I cannot have Demerol if I stay on my Zelepar. I talked to the Sleep Specialist Doctor about what I would need to do about the Apnea when I have surgery, and I talked to him about the Demerol interaction I had discovered. He suggested I might want to tell them that I was allergic to Demerol, so it would be marked clearly on my chart and they wouldn't dare give it to me. The combination is extremely dangerous, so I might as well be allergic to it, right???

Now the only thing left to do is to make an appointment with the Orthopedic doctor, so I can get another cortisone shot in my right knee, which has arthritis in it. I don't want to be hobbling around the way I am now, trying to recuperate from major surgery!

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Monday, May 28, 2007

Decided Against It

I do appreciate the feedback you gave me on the decision about joining the St. Vincent's facility, but we finally decided not to do it at this time. Time was, after all, the deciding factor. It was going to eat up about 3 hours each day I went, and to get any good out of it, I would have to have gone at least 2 days a week, if not 3. I think I can accomplish just about as much with home exercise equipment and our time at the walking track, which is about 5 minutes from home. Of course, in this day and time, we have to take gas prices into account too, and we do live a long way from any of these kinds of sports facilities, with some really bad traffic to contend with both ways.

I continue to accomplish more and more when I exercise in the mornings, but I'm paying for it each night with a lot of sore muscles. DH fusses at me for over doing it, but it doesn't ever seem like I am at the time. It's only later in the day that I realize I've over taxed my muscles. I think some of this pain I experience is coming from the Peripheral Neuropathy, particularly since I went off the Cymbalta. My Neurologist wasn't the least concerned about me taking it in conjunction with the Zelepar, even though the Pharmacist had warned me about the combination. So, I may yet go back on it. But for now, I'm still adjusting to adding the Requip back to my meds, so I don't want to add 2 new drugs at the same time.

The Requip is beginning to upset my stomach, just the way it did last time. I'm having lots of heartburn and belching a lot. Nothing else has changed, so it has to be the culprit. I'll put up with it if it doesn't get much worse than this, but I'm still planning to ask for the Neupro patch when I go back to Dr. S in June.

Just to document where I stand physically:

I can now sit down and stand up from a straight chair without using my arms, at least in the morning. I can't by the evening, though. Sofas and soft chairs I haven't mastered yet. I can walk over 3000 steps a day on the pedometer most days. I've put the handicap toilet seat away for now, as I can deal with the standard one, as long as I have the sink cabinet to hold onto. I'm still using the cane when we go to yard sales and such, where the terrain is unknown, and I still don't go up and down flights of stairs if I can avoid it. Crouching down to get things in and out of my kitchen cabinets is difficult, so I usually depend on DH to do that for me. I lose my balance too easily, particularly with something in my hands. My core muscles, those of the trunk, are definitely getting stronger as I continue to exercise, as I can now lift my behind when I do what's called the Bridge. It's a simple exercise, really. All you do is lie on your back, feet on the floor, with your knees raised, and try to lift your bottom. Until recently, I couldn't lift more than a half inch or so, but now I'm coming completely off the floor.

I'm doing the Tai Chi short form almost every day now, and I'm getting pretty good at it again. My balance continues to improve.

The biggest problem I am having right now, I suppose, is the insomnia. As soon as I started back on the Requip, it started back again. I haven't been able to sleep past 3:00 AM for some time now. I get a lot done on the computer, but I really need the sleep! I've tried napping later in the day, but that doesn't work unless I'm in the car. Then I can doze off almost instantly ;).

So, I am progressing, but I have lots of room for improvement. Eating healthy foods and exercising are just as much medicines for me as anything that comes in a bottle!

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Wednesday, February 07, 2007

Cymbalta + Zelepar = BIG NO NO!!

I sent my DH to the drug store yesterday evening to pick up the prescriptions I had ordered earlier. When he brought the bag back, our local pharmacist had written a large note on it. It seems my Cymbalta and Zelepar can have a dangerous drug interaction. So, he didn't fill the Cymbalta, but told me to call my doctor.

Before calling the Neurologist, I thought I'd look up a little about this combination for myself on the Internet. Well .... I don't need to call the doctor!! Cymbalta is OUT!! Not only do the two cancel each other out, but the combination can cause something called Serotonin Syndrome/Poisoning, which can be fatal in its extreme manifestation. I have definitely had one of the milder symptoms, which I was blaming on the Zelepar, as it started after I started taking it. Out of nowhere, I would start sweating profusely and be so hot I just about couldn't stand it. I've mentioned this before, as it feels just like menopause hot flashes at their worst.

The Cymbalta prescription came from my General Practitioner, who prescribed it almost a year ago. The Neurologist had a complete list of my medications, so at least he should have known I was on it when he put me on Zelepar, which is the dissolving form of Selegiline.

So, as is so often true, it's the Pharmacist who is the expert when it comes to such interactions of medicines. This is the best argument I know of to use only one pharmacy for all prescriptions.

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