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!!

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.

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.

Wonderful Cortisone

I went to the Orthopedist yesterday and talked to him about my knee and shoulder. I'm satisfied that the shoulder is responding well to the Physical Therapy, and I can tell that the leg, hip, and thigh muscles have strengthened since I've been going to PT, but my knee still will not straighten all the way out, and getting up and down from a chair still is extremely painful. So, he's put in a request with my insurance for the MRI, so we'll both know what's going on in there.

He did ask me if I wanted a Cortisone shot, and said it might give me relief for anywhere from a few days to a few months. The shot hurt something horrible going in, and the knee was awfully sore yesterday, but it's not hurting now! It's been so long since I could sit down without inwardly, or sometimes outwardly, groaning, that this is quite a pleasant change. I pray that I will be one of the ones to get long term relief with the shot. I've always had good success with epidurals lasting a long time, so I'm optimistic.

I did ask about going back for more PT, and his PA told me I needed to check with my insurance to see how many times they will authorize. She said I might want to keep some therapy sessions available, just in case I do end up having surgery. It's a shame that insurance companies control decisions like this, not the doctors and therapists who know how much I need this. I have good insurance though, so I'll be talking to them Monday to find out where I stand.

I had already decided before I got hurt taking care of Daddy that I would join a fitness "club" run by St. Vincent's hospital in Birmingham after he died, but the knee put that on hold. They have a program where you pay for a complete evaluation of your physical condition and they supervise your exercise program, with quarterly checkups of your progress with a Physical Therapist. They have all kinds of equipment, a pool, and lots of different classes I can take. I've been chatting back and forth with Lynda of Pilates & Reiki in Paradise about possible nearby instructors suitable for a person with Parkinson's, and oddly enough, this is the very Pilates class she suggested. Small world.

So, for the time being at least, I'm pain free, with plans for keeping it that way. We're going on our usual Date Day today, and by the time I've been in and out of the car dozens of times today, I'll know if I'm going to be one of the lucky one for whom Cortisone is a wonder drug. Wish me luck!!

MRI Scheduled!

April, from Dr. S's office, called yesterday afternoon, and I'm scheduled for the brain MRI today at 2:30!! I was determined not to spend any time waiting around for HealthSpring to approve the tests, but I sure am glad they did it sooner, rather than later.

I 've had this type of MRI done before. In fact, that's why he wants this one. When I had it done years ago, it was because I was having severe migraine headaches. I had a terrible headache the day of the test, and it was all I could do to keep from throwing up with all that hammering. At least now, with the Topamax, I don't go into the test hurting. That previous MRI showed increased cerebral spinal fluid pressure, with a wide white space between the two halves of the brain. It will be interesting to see what this one shows, because the Topamax is the only thing that's keeping me from having migraines now. I was living off of Goody powders before he put me on those. I'm on the steroids (Entocort) now, too, for the colitis, so that may make a difference, too.

Anyway, this is the MRI where they put your head inside a football helmet thingy, and you have to stay completely still through the whole thing. I don't know if they will be using dye or not. They did last time. I'll have to fill up on fluids today, just in case, so the IV will be easier to get, if they need to.