Had a New EEG Test Yesterday

I had my second EEG test yesterday, but my reactions to it were considerably different from the one I had two years ago. Back then, my Neurologist was trying to decide if I had Parkinson's or not. My only symptom at that time was a very labored, slow walk, that he called Bradykinesia. I did not have any problems with the EEG test at all.

Things have changed a good bit since then. Now I have lots of tremors, jerks, and facial tics, that only get worse if I am in a stressful situation, or cannot get my mind "somewhere else". I have discovered that when I am deeply concentrating on something, such as writing here on the computer, that the movements are quieted down considerably.

But put me in a situation that is the least stressful, or in one where I am just sitting with nothing actively going on, and I turn into the hurky jerky girl. Church is the usual place that happens. The only way to stop it that I have found is to go into a meditative state, finding some minute crack or spot on the wall to give my total attention to. It spaces me out, I don't hear the sermon, but at least I am not bothering all the people who sit behind us.

And now I know that it happens during EEG tests, too. With nothing to occupy my concentration, following her directions to do fast open mouth breathing for 3 minutes to make me hyperventilate, and some very uncomfortable series of strobe lights that made me feel even more stressed, there just wasn't any way to stop the jerks. The harder I tried to be still, as she had asked, the more I moved. She finally gave up and said at least it would let the doctors see what my brain was doing while my body was doing its own thing. She did tell me to open my mouth and stop pressing my lips together, so my mouth trembled and pulled to the left the whole time, too.

It took 45 minutes to complete the test, and I was exhausted the rest of the day.

The funny part was my hair!! They do not use the scull cap method, so each of these electrodes was stuck to my scalp with something like KY jelly. And there were lots of electrodes - maybe in the 20's? When she was through and told me to look in the mirror, I looked like something from a Monty Python movie. I smoothed my hair down as best I could, but would have loved to have walked out just as I was, so hubby could get a kick out of it. If he had been the only one in the waiting room I would have, but it was a very busy place.

We were set to drive some distance to a family funeral after the test, so I had anticipated the hair goo and planned to stop at any franchise hair salon along the way and get my hair washed. So that was easily enough taken care of. I am glad I knew to expect that, as it could have been a real problem if we had been running short on time. I didn't appreciate having to pay $12 just to get it washed and blown dry with no styling, but there wasn't anything else to do. I had also brought a complete change of clothes and shoes, so I would not have to take the test in good clothes.

We did get into a situation of some very expensive parking at UAB, though, that just added to the very expensive day. We parked in the closest parking deck to the Sparks Clinic at UAB, but they would not validate his ticket, since we had not used the "right" deck. Of course, they had not told me that I should park in any particular one when they called to tell me the appointment time. So, instead of costing $4.50 to park, it cost us $15.00!!! We were not at all happy about that!! UAB will be hearing from me about that today!!

When we did get to Cleveland, the little town in north Alabama where the funeral was going to be, we ate at a very nice looking local restaurant. Not surprisingly, considering the way the rest of the day had been, their prices were high. So, we took the lunch special of the day. The vegetables were great, but the meat was lousy. The waitress seemed genuinely shocked when hubby complained about it.

I really was worn out by the time the graveside funeral was over, so we begged off on eating at the church with the family and headed straight home. This was my sister in law's side of the family, so I really didn't know that many people there anyway, and I am not comfortable in unfamiliar social situations. I have always been that way, but it's gotten worse now that I jerk and twitch so much.

So we had a full day, one that I am glad to have over with. I have an appointment with Dr. Watt's team in May, with an MRI to be schedules before then, so I will have to wait that long to find out the results of the EEG. Should be very revealing, since I displayed the full range of all my jerks, tics, smirks, and shakes while the brain's electrical activity was being graphed.

I am optimistic that all these tests are going to show more than they did two years ago, and that they will be able to decide what is wrong with me with more certainty. Of course, I know there is no such thing medically in life as a certainty, but I can rely on God to get me through it all. Patience, Rosemary, Patience.

Re-Testing Peripheral Neuropathy Monday

I see the MDS specialist the first week of April, so it seemed like a good idea to ask for a Neuropathy test before I see him. When I first saw my Neurologist, it was at the suggestion of my Orthopedist, who had concluded that my super labored walking was not caused by lumbar disk pressure.

He sent me to Lakeshore to have the Nerve Conduction Velocity Test, which uses patches like those they stick on the chest to check for heart problems. They pass an electric current and check to see how long it takes the message to register between the patches. It's uncomfortable at the time, but not really too bad. The other test is called Electromyography. That's the one where they poke electrodes the size of needles in your muscles, and it is supposed to show how well the muscles respond when the nerve is stimulated. That test is not at all comfortable. I actually had little pin prick size blood spots all over my legs when that one was over.

Anyway, the results showed definite Axonal Peripheral Neuropathy, mostly in my right leg. Because I was having trouble walking, and the test order came as a result of my Ortho dealing with my back and legs, he did not order the test to be done on my arms as well.

My Neuro was not at all happy that he did not have results for my arms as well as my legs, but he proceeded with the info he had, as my insurance would not likely have paid for a repeat test so soon.

So, I talked to his nurse a couple of days ago, and I'm scheduled to have the complete PN test battery Monday, at my "suggestion" - translate that as strong urging. This test is very uncomfortable, but it seems to me I need to get any tests done now, not wait and "waste" the visit with this very hard to see Head of Neurology at UAB.

I'm still experimenting with any variables I can think of. so, for the last four days I have not used the TAP dental device, which is to control my mild Sleep Apnea. The mouth tics started about the same time I started using the TAP, and I'm trying to be sure that this off and on again mouth twitching I've been doing is not being aggravated by the mouthpiece. Surprisingly, I'm still sleeping 7 or 8 hours a night, even without it. I think it did break me of the mouth breathing habit, which may be the cause of the relaxed jaw that was allowing my throat to close up during sleep.

I have noticed a definite correlation between the mouth twitches or tics and how stressed or tired I am. So they get worse as the day goes on. If I stop to think about them, I can stop them momentarily, but it's as if my mouth is determined to move, no matter what I do, and it soon starts back up again.

I figure I'll make sure Monday that there aren't any other tests I should have done, or repeat, before seeing Dr. Watts at UAB. I have to call his office to change my insurance information to show that Medicare is my Primary insurance now, as this is the month I turn 65. So I will talk to his nurse and see if they suggest any other tests. I have learned to be proactive in such situations. It amazes me that doctor's offices don't initiate this kind of pre-visit planning, but they don't.

By way of contrast, when we made an appointment with a financial counselor to help us with investing my inheritance, we received a huge packet of papers to fill out and a long list of documents to bring with us for our first meeting. That's the way it should be with doctors, in my opinion.

So, I will do what I can to document everything and have everything ready for this crucial visit. I can't even talk to someone about Long Term Care insurance, or anything insurance related, until I have a diagnosis. No insurance company in their right mind would take me on as a customer right now.

Tax Time is looming, and that's one thing I am dreading doing, but I can't put it off much longer. Oh, did you know that people who file an extension will NOT receive this stimulus package $300 thingy they all keep talking about? I have always filed on time, but I know some people habitually delay it, and might need to know that.

I continue to work to get our inventory of plush lovies online, and we have managed to help several families get replacements for lost toys lately, which is extremely satisfying. I'm also helping to beta test a new Mood community on Patients Like Me, and finding the charting of my own moods to be interesting.

I may be twitching, but I am in a good mood today, and that's a great way to end this post.

Life Goes ON

My Physical Therapy office called yesterday, and the appointment is set for Jan.2, so that's taken care of. I have been scouring the Internet, looking for some indication of the meaning of some of the neurological tests my Neuro did on me in his office the other day, but still not having any luck. I think I will end up calling his nurse, and see if she can help me understand what happened. We were both just in shock, I think, in his office, and I didn't ask enough questions. Now I could kick myself for not asking dozens!!

Also, I am wondering if I should try to wean myself off of the meds he left me on, before I see the MDS in April. And I also need to ask if there are any tests that my Neuro should be scheduling before then, too. When I first went to Dr. S, he was less than pleased to see that the Peripheral Neuropathy tests I had already had were only on my legs. They did not test my arms. So it would seem logical to me to have that workup done again, but more thoroughly, sometime close to my appointment in April. Otherwise, I can just see it now. I'll go in and talk to this fellow, walk, and get poked and prodded, and then he will order a bunch of tests, and I won't see him again for another 4 months. This NOT KNOWING could last the better part of a year, if that's the way it plays out.

I have been blessed with so many wonderful net friends showing their support and concern over all these mixed up feelings I am having. It's humbling to know that all of you are out there, praying for me. With all that love coming my way, and God's help, I am already beginning to ease out of the horrible funk this news put me in. I can choose to believe I have something worse than PD, or not. I choose NOT, doggonit!!

So, another Friday has rolled around. It feels a little different, with this uncertainty surrounding us, but we will find something enjoyable to do today, and life will go on. Our Christmas stocking gift hunt is finally ended, and it's time to wrap the presents for the grandkids, and our children, too. I haven't looked yet to see if there are any Estate Sales today, but I kind of doubt it. Who knows, we might go see another movie.

We enjoyed "Perfect Holiday" last week, as a light, entertaining, feel good movie, regardless of what the critics had to say about it. And we'll probably end up seeing "Legion" today, even though the critics have panned it, too. Not every movie has to be Academy Award quality to be enjoyed, right? Although I am a little surprised that Will Smith allowed himself to be in a movie that was less than box office hit quality. From what I've read, it's the Zombies that are so poorly done, not his performance. And there are some flaws with the premise of the story, too, which is what makes Science Fiction work as a genre. Once you have decided to "believe" in a certain situation, the rest of the story must stay true to that premise. From what the critics say, this one does not, and that's a pity. But, flaws and all, I am sure I will enjoy it, as I really like his acting, and I am a Science Fiction buff from way back.

So our lives move along, and I will try to let go of these nagging thoughts, and look on the bright side of it all. I look forward to spending time with our family on Christmas Eve and Christmas Day, and not think beyond that for now. Here's wishing you all a very happy Christmas time with your families, too!

This is a Hard Post to Write

I saw my Neurologist yesterday, and it turns out I did have good reason to be apprehensive about the appointment.

First of all, he agreed that I did not have any business having the epidurals on my cervical vertebrae. So, I called my Orthopedist to let them know that they could schedule the Physical Therapy, but not the epidurals. They called back later, and have already faxed the prescription to the PT I used last time, which is close to home. So, hopefully, I will be getting some relief from the neck pain and stiffness soon. Holidays, of course, will be in the way of a regular schedule, so who knows when I will actually start the sessions. It could easily be the beginning of next year.

He also took me off of the Levadopa/Carbidopa plus Lodosyn meds that the ER doc had added to my treatment, since it didn't seem to be helping much at all. Taking too much of these meds can cause dyskinesia, which is involuntary movements. That may be why I had such an odd tremor develop of late, plus all the facial and tongue tics I have been experiencing.

But the news from the exam that has me so upset right now is that he is no longer sure I have Parkinson's. He watched me walk, and I was so nervous by then that he got to see me at my worst. Both legs bobbing up and down like I was trying to walk across the floor of one of those carnival blow up bounce machines, and having to hold out my arms to the sides to keep my balance. Turning around and coming back towards him was just as bad. He had me take off my socks and shoes, and he did all the usual hitting with the hammer. He scraped the bottom of each foot, and also suddenly pushed both feet straight up several times, in a slapping kind of motion.

I have had the foot scrape thing done many times before, and I know what that was testing me for - the Babinski effect. That's a test I failed some years ago when I was seeing a different Neurologist for migraine headaches. As far as I know I have not failed it since then. It has to do with the way your toes curl or straighten out when a hard object is scraped from the heel towards the toes. The normal reflex is to curl the toes inward. If the toes spread out, with the big toe stretching upward, it's a sign of a lower extremity nerve problem. I don't know if I passed it this time or not. He didn't say, and I was too upset to ask. I have tried to look up what the sudden slapping of my feet upward meant, as I have never had that done to me before, but I haven't been able to come up with the right search terms yet to find out what that was all about. He did move my arms around, while I kept them relaxed, and said he did not feel any cog wheeling. That's something he would expect to find if I had Parkinson's, and he has said in the past that he did feel it. It has something to do with the tremors, but that's about all I know about cog wheeling.

They have made an appointment for me with the Chair of the Neurology Department at the University of Alabama in Birmingham. He is the Movement Disorder Specialist in this area, and is supposed to be my best chance of finding out what is wrong with me. Parkinson's effects people in so many different ways, it may yet turn out to be the PD that my Neuro had initially diagnosed.

But for now, he has listed my diagnosis as the Peripheral Neuropathy plus Gait Debility. I'm back to that "not knowing" stage, and it is extremely upsetting for me, and for my dear sweet hubby. Of course, as you might expect with the chair of the department, I can't get an appointment until the end of April. That's going to be a long, long wait that is not going to be easy.

I felt such relief when my Neuro put a name to what was happening to me - even if it was that I had Parkinson's. Now I am in limbo again, and I hate it.

Hubby has asked that I stop reading and researching about Parkinson's for awhile, just to be sure that I have not been subconsciously absorbing the symptoms that I was reading about. That's a fair request, so I have said a temporary goodbye to my Parkie friends on PatientsLikeMe, and will not be doing any PD research for awhile. I am going to continue to try to find out more about Peripheral Neuropathy, though, because there is no doubt that I have that. Unlike Parkinson's, there are definitive tests for PN, which I most definitely have.

I don't know how to adequately explain how I am feeling about all this right now. It's almost as if I found out I was adopted, or something like that. It's like my identity has been ripped to shreds, if that makes sense. I have developed some really close friendships with some wonderful PWP over the last year. Now, with one sentence, my Neuro has put the nature of that relationship in limbo.

This NOT KNOWING stage I am in again is very hard to deal with. I am vacillating between being scared of something worse than Parkinson's, and being relieved that it could be something less progressive in nature than PD.

God is forever trying to teach me patience, and reliance on Him, rather than my own abilities. Looks like He is working on that big time right now. We haven't actually said anything out loud, but I think hubby and I are going to keep this turn of events to ourselves for now. I can't see any good reason to add this uncertainty to our children's lives. They have enough to worry about on their own. So, I will pour out my feelings here on my blog, since no one who knows me personally ever reads 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?

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.

Standing MRI Tomorrow / Praying for Friends

Hubby went off yesterday morning to his stint on Jury Duty, only to be sent back home. All the cases for this week had been handled through plea bargains, and there were no cases!! He had to call back last night to see if anything had changed, and they dismissed all the jurors!!

So, I got busy making arrangements to have my MRI done, and it is scheduled for tomorrow. I'm going to call my Neurologist's office today and see if they have any suggestions, because it dawned on me that with this standing MRI, I would need to be still for quite awhile. That was not a problem with the knee MRI I had done at this same place. I was not having foot and leg tremors then, but I am now.

It just seems like this PD manages to worm its way into every single thing I try to do.

I shouldn't be whining, though, as I am so much better off than some of my Parkie friends are. It grieves me, for their sakes, to read of all the pain and problems that PD is causing some wonderful people that I care deeply about on the PLM forum and on the PD blogs I keep up with. I keep them in the forefront of my prayers daily.

Hubby and I are also extremely concerned about a young teen aged, very gifted and sweet boy from our church, who is seriously ill. He went to the doctor Friday, but the doctor ran all kinds of tests and could not find anything to explain how sick he felt, and sent him back home.

Saturday he was in the hospital with pneumonia. Monday, he was put in ICU, and yesterday he was airlifted to the ICU at Children's Hospital in Birmingham.

This single mom has a Downs Syndrome child, as well, so attending to the needs of both of them must be putting all kinds of extra strain on her during this scary time. Thankfully, she has family living nearby who can help her out. We spent a few minutes with him in the ICU yesterday, only to come home and find out about the airlift. I talked to her for just a moment or two in the ICU waiting room at Children's last night, and she sounded OK, but I imagine she is faking a lot of that calm.

So, I feel very small and insignificant at times like this, with my petty little problems. All we can do is keep them in our prayers, and offer to help in any way we can.

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!

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.

Trying a Different C-Pap Mask

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, 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.

Getting a Sleep Study Done

I went to see my Neurologist yesterday, and he is very pleased with my physical progress. He doesn't want to change any of my meds, though, until I have had a sleep study. So, I have an appointment in July with a Sleep Disorder specialist. I'm not sure what that kind of doctor is called, but they gave me a book's worth of forms to fill out about myself that I have to have done for the appointment. I'm surprised they didn't ask me if I painted my toenails!!

I've been doing a little research about this insomnia thing and Parkinson's, and it's no wonder that this is bothering me. Something like 88% of PWP complain of insomnia!! Whether it's the disease or the meds we take, I'm not sure, but that's a significant symptom to deal with.

I have recently bought two more books that I think are going to be very helpful. One is Parkinson's - The Art of Moving, by John Argue, and the other is The Book of Exercise and Yoga for Those with Parkinson's Disease, by Lori Newell, M.A., which shows how to do each exercise from a chair if the PWP requires it. Add the Chi Walking book I've mentioned before, by Danny and Catherine Dryer, to that list, and I think any Parkie would find help with improving their body mechanics. I found used copies of the first two on Amazon recently, and I bought the walking book at a local book store. Thanks to Tami for suggesting the Art of Moving book.

DH mentioned last night that the slope of our newly installed home "track" makes it harder for him to get in as many steps as he does on the track at the local park. And I thought it was just me.

We now have extended our driveway around to the side of our house, with a new garage to be built next week, hopefully. But we didn't stop there. We had them put in a side walk to underneath our deck, and had a patio put in there. There's only about a five foot pathway between the end of the patio and the beginning of the sidewalk that goes from the deck steps to the front driveway that we need to finish with stepping stones.

That means we essentially have our own personal track now. We get an up and down slope going to and from the back yard, as we have a full daylight basement, with plenty of level walking up front and on the new driveway. Now I can step outside during the day and go around a time or two any time I get stiff or need a break from working on the computer. I'm not supposed to sit still more than about 15 minutes at a time, according to the Art of Moving book, so this is great. I think that's also why sitting through church bothers me so much. I can't wiggle enough in the pew to stay comfortable LOL!!

DH is walking between two and three miles each day we go to the track, but he's not able to do much else in the way of exercising. He had colon cancer several years ago, and the whole incision, from way above the navel all the way down, herniated last year. He has this huge piece of mesh sewn into his abdomen to hold it all together. You can actually see the bulge in his tummy where the muscles are just not able to support his mid section. The doctor cautioned him not to do crunches or anything similar, so it's hard for him to slim his middle down. He's pretty much stopped wearing trousers with belts, as they are just not comfortable.

So, I'm glad that my Parkinson's is giving him the motivation to walk consistently. He's a night owl, and if it weren't for getting up to keep me walking, I don't think he would get up early on his own. And, of course, it's way too hot to walk much around here unless you go very early. We are usually at the track by 6:00AM, with plenty of other walkers already going around when we get there. On days he doesn't feel like getting up that early, he's been walking around our own track as late as 10:00 at night!! So, we're helping each other to stay motivated, and that's a good thing.

Still NO Sleep

Insomnia is turning out to be my biggest problem right now, because it effects my stamina and mental agility as the day wears on. I start out each morning all fresh and energetic, even with only 4 hours sleep. I'm wide awake and rarin' to go! But I fizzle. Not surprising considering it's been over a month since I've had more than 4 hours a night. I doze in the car when we go anywhere, but other than that, there's nothing.

My Neurologist appointment is coming next week, and he had mentioned doing a sleep study. I think it's time, don't you?? I can't imagine what he can do about it, though, as I'm comfortable in the recliner, and if I snore, there's no one nearby to tell me about it LOL. I do hear my DH sawing away in the bedroom, though. Ah! Maybe HE's the culprit!! ROTFL

I'm really proud of how much stronger physically I am right now, and I'm determined to keep up the good work. I'm doing the Tai Chi almost every day, which definitely improves my balance, walking about 6000 steps on average, lifting 1 lb weights to do the arm exercises, and working around the house more than I have in a long time.

We're about to close on Daddy's house, so that will be out of the way. That leaves his car and all the stuff in the house to get rid of, plus some small insurance policies to deal with. UGH!

I continue to stay behind on all my computer work, but the eBay business is picking up, now that I'm listing new items every day. Maybe in the year 2020 I'll have all of the things we have been buying at Estate Sales sold. HA! Maybe ... but we keep on buying, 'cause that's the fun part for us, as we do that together. One step forward and two steps back! All the online part is strictly my doings. Hubby can't stand computers.

I really do miss all of you, but I just can't work it all in. I don't think I think as fast as I used to.

Quadriceps Are Giving Me Fits

Well, I think the Physical Therapist came close to killing me last Thursday LOL. The tops of my thighs, where the quadriceps muscles are, were so sore Friday through Sunday that it was all I could do to get in and out of the car or sit down or get up from even the handicap toilet. I spent the whole time on strong pain pills, and much of it with the hot pad in use.

So, when I went for therapy yesterday I was very quick to let her know that whatever she did Thursday was too much. She cut way back and basically just did a few warm ups and then put me on the ultrasound, electrical stimulation, and moist heat for a long time. She doesn't want me to walk at the track but every other day for one lap, avoiding the days when I have therapy. She says as weak as the quadriceps are that she's afraid I will lose my balance or start to fall. Without the quads being strong, she says I'll damage my knee. She was also surprised that I was able to walk even the quarter mile around the track once, even with the cane. She says I'm compensating in some way for the weak quads, which means I have just completely forgotten how to walk normally. I really try to do it "right," but I must not be, according to her.

She did say that the other PN patient she has is doing better, and she did give her the URL for this blog. I'm going to be disappointed if she doesn't write, as it will do me good to talk to someone who has a similar problem.

I was a good girl this morning, and only did one slow lap with the cane, concentrating on the technique for each step. Then I did my home exercises while DH walked his 2 miles. He lapped me 3 times before I could get around once! ROTFL

I go back to the Orthopedist next week, and I'll decide after I talk to him whether I should try to get an appointment with my Neurologist sooner than scheduled. I suspect he will agree with me on that. He was planning on getting an MRI of my knee once I had the PT, as that's what my insurance required before they would authorize the MRI. I am so thankful that I had this opportunity to go to Physical Therapy. It's a shame that insurance companies are so stingy with authorizing it. I can't get it for chronic conditions, so having Parkinson's Disease or Peripheral Neuropathy wouldn't get me permission. But wrenching my knee did!! Strange twisted logic - it's OK for me to fall because of weak muscles sometime in the future????

The deadline for our BLOG VILLAGE HEALTH Carnival is this Friday, but I haven't decided yet which post to enter from this blog. Too many to choose from, I guess. If you have a post you could enter, I'd appreciate your participation.

Sleep? What's That???

I'm tired. I've reached the point that I'm too tired to sleep, even when I could. I have the Ambien CR, but the Neurologist doesn't want me taking it all the time.

Besides, I might not hear Daddy if I'm doped up. He's becoming very unpredictable as to his sleeping patterns. There have been some nights lately where he hallucinated much of the night, even clawing to take off his Depends and trying to climb over the bed rails. Other nights, he talks in his sleep. I've had several lengthy conversations with him in the middle of the night, where he never opens his eyes, and I can tell he's still asleep LOL! Other nights, he barely twitches a muscle, but stays in exactly the same place all night long. That's not good for his skin.

The lift has helped with the lack of strength problem tremendously (Daddy's and mine, too), and Daddy is accepting it without argument, thank goodness. He's also letting us feed him, which surprised me. I thought he'd balk, but I think he's beyond that. He still takes spells of hateful talk, but it doesn't happen too often any more. Frances heard it for the first time yesterday. It really surprised her. We told her that meant she was part of the family now. ;)

We've reached that point in care giving where we pretty much control everything to do with Daddy now. We've bought sweat pants and put his regular zipper pants away. I've put up his watch, wallet, and keys, which he'd always put on first thing each morning. He's no longer wearing athletic undershirts or his favorite flannel shirts. We've bought him some knit Henley long sleeve shirts instead, so we could get them on and off easier that the unstretching flannels. He's in white diabetic ankle socks, instead of his dress socks, and I can't remember the last time he had on both shoes. In fact now we're not even bothering with the slipper socks, as he's not standing or walking. The sores on his bottom and his heel look much better, because we have more control over his skin now that he's not walking and in his own bed. It's no wonder he keeps asking to go home! He certainly doesn't recognize the life he's living now. But he's safe (well, except for his rail climbing times), and he's as comfortable as we can get him.

The Zelepar seems to be sufficient for my physical Parkinson's symptoms, but I'm not sure any medicine could improve the mental deterioration I see, considering all we're doing right now. Thank goodness for backspace and spell check!!

At the rate I'm going it won't be long before it's just too difficult to try to correct all my typing mistakes. I'll just join Joe, and let you see what it's really like for me HA!!

So, I've cut out what I could in the way of other responsibilities. I haven't put a new item on eBay in some time, and I've put up a notice that we are not able to ship promptly right now. I've sent an email to all the BLOG VILLAGE members, asking them to help me with the monthly check on all the voting links and dead blogs. I've even cut down on my own reading and commenting, not because I want to, but because I'm just overwhelmed right now.

As you can see, I'm not very cheery today. I'll feel better once I get some sleep, though - whenever that will be.

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.

Zelepar is Working Much Better, Insomnia Is Still a Challenge

Evidently the reason I was not getting good results with the Zelepar was due to the strep infection. (I did get a refill on the antibiotic, so my throat continues to improve.) This time, my walking is quite normal, and so is my balance. I am taking the second dose earlier than I did last time, as I think it was one of the factors that was keeping me from sleeping. So this has been a pleasant surprise, and a welcome result.

As for sleeping, that's been, shall we say, interesting? My Neurologist did not want me to stay on the Ambien CR continuously, although he did refill the prescription. So, I figured I'd better find some other way to get some sleep. It wasn't working all that great any more, anyway.

Daddy has been taking one or two Tylenol PM for years, so I figured I'd give it a try. I tried two pills for two nights, then cut back to one pill. I was still waking up after a few hours, but went back to sleep quicker. I was getting more hours sleep with the Tylenol than I had been recently with the prescription for Ambien. Go figure. But, I felt drugged for several hours in the morning.

Time to try something else, right? I figured it was time I found out just how much sleep I would get without any sleep aid. The first night I got very little sleep, and wasn't even sleepy the next day. But after that first night, I've been sleeping just about as much as I did with the Ambien. So, I'm just going to do without, saving the Ambien CR for special situations. That way, maybe I'll get the longer sleep time, the way I did the first few nights I took it.

Strange Things Are Hapnin'

I went to my Neurologist last Friday, and I explained to him all that had been going on the whole time I was trying out the Zelepar. He agreed that the medicine had not received a fair chance at working. So, he gave me a prescription for it, with instructions to use if for a month. If I was not pleased with the way it relieved my symptoms, I could then add the Requip I have taken before back to my schedule. Now that my digestive system is behaving, I told him I thought I could handle the Requip just fine.

Of course, being the little town that ours is, our Pharmacy didn't have the Zelepar in stock. He has to order unusual medicines, but they come the next business day, and that works OK, most of the time. Of course this was Friday afternoon, when we dropped off the prescription, so I was without all weekend. I did the only thing I knew to do - I used the Requip I already had. My tummy didn't complain a bit, either.

My throat is still irritated, and I finished the antibiotic today, so I'm thinking I'll see if the nurse will swab my throat again, or just refill the prescription. I'm not convinced that the strep is gone, and I can't afford a relapse. I had rheumatic fever as a baby, so my heart is particularly vulnerable to strep infections.

I'm feeling good about the medicines Dr. S. has me on for the Parkinson's now, and I'm sure my GP will take care of my throat, so things are settling down for me.

It's just as well, because Daddy continues to decline. His arm is much better, thanks to the arm band, but his mind, and his body in general, continue to go down hill. We've had some difficulty all along getting his bowels to move, as one might expect from a 101 year old. I was using the glycerin suppositories I had to help him go, plus he is on Colace as a stool softener. The last time I used the suppository, it didn't help, which I thought was strange. So, I figured, since I use two of them, I'd use two on him. To my surprise, I discovered the first suppository still in place - not melted in the least! His body temp is so low that it didn't dissolve!!

So, even though I had been trying to put it off, I felt I had to call the Hospice Nurse, and request help giving him an enema. The enema was an ordeal for him, but it helped. That was yesterday. Today, his strength is noticeably less, and his confusion is noticeably more. His mind and body just can't cope with any kind of assault now, even if it's for his own good. Going to the Orthopedist sent him downhill, and the enema just pushed him that much further.

I can only pray that I will do well on the Zelepar, or the Zelepar and Requip combination, as I think it's clear that Daddy has taken a definite turn for the worse. In God's good time, this will all work out. I just have to take one step at a time, and leave the end results to Him.

A Clinical Trial of One??

In a real Clinical Trial, doctors use a very large number of people, usually, but not always, divided into two groups. One group gets the medicine being tested, and the other group gets fake medicine, called a placebo. At the end of the trial, if the people getting the real medicine have improved considerably more than the group getting the placebo, the medicine is assumed to be the cause of the improvement. That's a good thing!

They use such large numbers of people to conduct these trials, because there are always going to be unforeseen situations that influence the effectiveness of the medicine for some people. Maybe a few of the subjects have an undiagnosed disease that makes even the best of medicines not work. Or maybe some of them are under a lot of stress that ruins their results.

When you see a new medicine being talked about with glowing praise of its effectiveness, you have to be very cautious about getting all excited about it. I have seen reports like that where the trial only had 16 people in it. That only gives doctors a hint that a certain medicine might be helpful. It's just not enough people to tell you much.

That's the problem with trying to find the right medicine for me, or any other PWP. We are, in a very real sense, our own Clinical Trial. The last time I was on Requip, I was terribly bloated, with horrible stomach cramps and gas. So, the Neurologist took me off of it, and he put me on Zelepar. That medicine dissolved under the tongue, so it doesn't bother the digestive system. My stomach improved tremendously. The question is, was that because of the Zelepar, or was it because, that same week, my Gastroenterologist changed the prescriptions I was taking for my stomach? Also, my symptoms were not alleviated as well when I was on the Zelepar --- BUT I had strep throat most of the time I was trying it, without knowing I was that sick.

There's no way to be sure, is there, with more than one medicine being changed at the same time, and with me being sick, too? I talked with my Neurologist yesterday about this, and the fact that I had gone back to 1 Requip pill a day for several days, because I ran out of the Zelepar samples before my appointment. Even though I had been on the Requip for several days, my stomach was doing just fine.

So, Dr. S. has prescribed another month of Zelepar, to give it a fair trial at helping my PD symptoms. If I am still not getting as good a results with it as I was the Requip, I am to add the old dosage of 3 times a day of Requip to the Zelepar, which I take 2 times a day. I don't see Dr. S. for 6 more weeks, to try to give me a chance to tell what is going to work best for me.

Parkinson's Disease is different from many diseases, where there is some MRI or blood test that will tell the doctor what is helping, and what is not. With PD, it really is up to me. I have to be the judge for myself if the Neurologist has prescribed the right medicine and the right dosage. Then he bases my prescriptions on his vast experience with many other PWP he has treated.

But it still boils down to a Clinical Trial of one - ME!

Tummy Improvement OR Walking Faster?

I've been on the new Zelepar medicine for several days now, and my digestive system is behaving just fine. I don't seem to be getting quite as much help with my gait as I did with the Requip or Sinemet, however, but I'm still on the samples. When I go back to the Neurologist next Friday, it may be that he will order a prescription for a higher dose or more doses, which might make the difference. Anyway, even if the dose stays where it is now, it seems like a reasonable trade off between stomach problems and balance and walking problems. I'd love to walk better, but I can live with it the way it is now, if I have to. It's nice not to spend part of every day miserable, with a hot pad on my tummy!

I said at first the Zelepar didn't taste bitter, however, I'd better amend that evaluation. Yes, it is bitter, but not enough to bother me, anyway. (The trick is to be sure you place it under, not on, the tongue.) It dissolves under my tongue so quickly that it's just a few seconds, and I can swallow it. You're not allowed to drink or eat anything for at least 5 minutes before or after taking it, but my saliva quickly washes the taste away.

We're still staying with my Daddy, which means I spend most of my days and every night in a hot house. We tried to find a compromise temperature for the thermostat, but at 101, he gets too cold, while we're still sweltering. I have noticed that I'm having more trouble with the heat this week, since I've been on the Zelepar, than I was before I started taking it. I'm getting what feels exactly like hot flashes several times a day, and I've been past that stage for some time now. I have read that Parkinson's can mess with the body's regulation of internal temperature, so I guess that's what's happening to me right now. Or is it because of the Zelepar? I really don't know.

I was on Requip before starting the Zelepar. Requip is a dopamine agonist, but Zelepar is an MAO-inhibitor, so they don't attack the PD symptoms the same way. There's big news in the Birmingham News today that a doctor at UAB is close to getting FDA approval for a patch version of a dopamine agonist. That will be good news for me, as the Requip did a better job of improving my balance and walking than it looks like the MAO-inhibitors are going to. I'm all for any PD med that I don't have to swallow!! So this is something else for me to be hopeful about.

It's great to see that there is good news on the horizon for the large number of people who really suffer with this disease. My own symptoms and discomfort level are so mild compared to people who have had Parkinson's for years. I pray that all this new research may bring them relief in the near future, instead of years from now.