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.

Still Doing Without Parkinson's Meds

I've been off all PD meds now since Jan. 25, and not doing a whole lot differently now than I was when I was on the meds. That has several possible meanings, so it really doesn't tell me much.

It could mean that I don't have PD.
It could mean that I have PD, and I'm one of the people who is not helped by the usual or any meds.
It could mean that these symptoms are related to lumbar and cervical disk problems I have.
It could mean that it's all in my head - that it's psychosomatic.
It could mean I do have some kind of neurological problem that has not been determined at this point.
It could be that these symptoms are from the Peripheral Neuropathy that I definitely have.

Whatever it means, I'm certainly not able to decide, so I continue to count the days until I see the MDS in April.

I have had several "spells" lately when I felt particularly stressed emotionally. Trying to get our taxes done, and dealing with my insurance company about the TAP claim both increased my symptoms.

But the worst was last Sunday during Sunday School. Our teacher was not there, but had left an outline of what she wanted us to discuss. We've done this before, as we are quite capable of carrying on a discussion on our own. For some reason, though, we weren't getting anywhere with the discussion, so they asked me to lead it. These are people I'm used to being around, I taught Sunday School for a long time before I had to stay home with parents, and I taught school for 29 years. Leading it meant moving from the back row I normally sit on, and sitting in front of everyone, instead. Trying to lead the discussion up front brought on the facial tics big time, and I was shaking much more than usual. The worse it got, the more self conscious I became of them seeing me jerk and shake, and that made it just that much worse. I finally just told them I needed to stop, because it was making me too nervous. Time was almost up, anyway, so that was the end of class.

It took me a long time to relax after that, and just thinking about it now is bringing back some of the stress.

I really don't think my symptoms are psychosomatic, but there's no doubt that stress makes them worse. That's why I'm usually at my worst at the Neurologist's office.

I've just bought a new laptop computer, and this one has the built in camera. I took a notion the other day to video myself while I worked at the computer. It was a very revealing look at my facial tics, even when I am busy and not particularly aware of them. Maybe I should save some videos and take my computer with me to the MDS appointment. Well, probably not, but I may keep some for myself, anyway.

Hubby and I talked about how I've been doing lately, and he is in agreement that I really don't seem much different off of the meds than I was when I was on them.

I continue to use the TENS device for my neck pain, as well as the Cervical Collar that I pump up, so it works like traction. I'm also doing the series of neck exercises daily, but we haven't started back to walking yet. Hubby is having a bad flareup with his back, and he's just not up to it right now. So, I piddle with the compost heap a couple of hours a week, and I am still working hard to get all our toys online in our shop catalog. That involves a good bit of shifting and lifting of tubs of toys, so I am getting some exercise each day.

All in all, I'd say my quality of life is better than a few months ago, at least, and for that I am grateful.

Still Doing Pretty Well

I'm still off the PD meds, and I just updated my Profile on PLM. My PDRS score, which is a way of quantifying symptoms, is better than it was a month ago. Of course it's still a very crude way to put a score on something that really can't be scored. If you've ever had to tell a nurse or doctor how you rate your pain on a 1 to 10 scale, then you know what I mean.

Church is still hard on me, as the pews are not comfortable for me now. They should be, as they have a very good cushion, but the space between pews is narrow, and the backs are hard. Turning to look at the preacher while he speaks still aggravates my neck, too.

I've stopped using the TEN's until I can talk to the Physical Therapist. They told me not to put it anywhere near my heart, which makes perfect sense. But there have been several times when I would get what felt like a pulsing muscle pull where my heart is in front, when I have the electrodes near the bottom of my shoulder blade. That would put the electricity near the back side of my heart as near as I can figure. So, I'm doing without it for now.

The cervical collar and the exercises seem to be helping, at least.

I have noticed several times in the last few days that I had had a painful burning sensation at different places on my feet. When I grab the place and rub it out, the place goes numb for a little while. I'm guessing that the PD meds have been blocking some of the Peripheral Neuropathy pain that is common with that problem.

I'm in the process of checking out a new laptop I bought this weekend. It was an open box item, so I only have 14 days to be sure there is nothing wrong with it. Plus, it came from a big chain store who had put all kinds of software on it advertising their company. It even had a user with a password they hadn't bothered to tell me about. I got around that by reinstalling the original disks. But now, I'm still uninstalling all that junk the computer manufacturer lets various software companies fill the computer with.

Most people probably pay the store to get the computer ready to use, but I enjoy the challenge. Fiddling with computers has always been enjoyable to me, but the most pleasure these days comes from the absolutely wonderful feeling hubby and I both get when we can help one of the families who have told their story on our Plush Memories Lost Toy Search Service blog find a lost lovey. And, to do that, I have to have a computer. So, to get the best thing - helping people - I get to do the next best thing - working on my computer.

So, I continue to watch how my body is behaving, and working on the computer, too.

Back on the PD Meds

I considered not going back on the meds, but we will be out of town for Christmas, and it didn't seem prudent to have even a slight possibility of ending up in a strange ER. So I stuck with the original plan, and went back on the full PD regimin yesterday afternoon.

It was very interesting to see what my right foot did last night when I got ready to go to sleep in my recliner. It must mean something, and I wish I had a video of it to show my doctors.

The toes and ball of my foot cramp sometimes very painfully, and no amount of pressure will make it stop. Hubby will get up and stand in front of my recliner, and I will push my foot into his thigh, which normally stops the cramp pretty well. But last night, each time he released the pressure, the cramp started again. At one point, when I thought it had quit, I moved my leg away from the pressure, and my foot went into this exaggerated flopping back and forth, up and down, and sideways. I had no control over it at all. It didn't hurt, and it looked so funny that I started laughing. Hubby thought I was doing it on purpose, and was surprised when I told him I wasn't. You should have seen the look on his face. Then, in an attempt to stop it, I pressed my foot into the recliner. At that point, my knee started bobbing up and down, as if to say, "You can't stop ME!" It was so funny that both of us ended up having a great big laugh out of it all. And then, just as suddenly as it had started - it stopped all on its own.

So again, I ask myself - if not Parkinson's - then what in the world could make my body act like that????? The only explanation that makes any sense to me is that this is all psychosomatic, and there is nothing really wrong with me at all. No, I don't think I am going crazy, but the mind can play terrible tricks on the body. Just think about the Stigmata - that someone's palms could bleed. I know there is such a thing as hysterical paralysis, so I don't put anything past what my mind could be doing to control my body. Yes, I spent the last 10 years or so under great stress, taking care of parents and our older daughter. And, our daughter was hospitalized with, of all things, Peripheral Neuropathy! Not that my symptoms look like she did, but it does seem odd that I would be diagnosed with a neurological disorder not too many months after taking care of her.

I've had this conversation with myself before, about this whole thing possibly being psychosomatic, way back in August of 2006. And here I am, a year and a half later, still wondering.

Went Off PD Meds Temporarily

I had my last PD medicine around 3:00PM Friday, so I have been without now for about 48 hours. I don't know how much of those meds are still in my system, but I suspect there's not much left.

So, how am I doing? Well, my right foot particularly, and the left to some extent, are shaking some, particularly when I stand in one place for more than just a few seconds. The wobbling foot and knee make my whole body rock rhythmically. It's nowhere near as bad as it looked in Dr. S's office Wednesday, but I was very nervous then, so the exaggerated gait was not overly surprising.

My right hand takes a notion to tremble off and on all day long, but I can usually stop it temporarily by thinking about it. Usually, I just start to jerk somewhere else, when I get one tremor stopped by relaxing and concentrating on just that one area. The facial and tongue tics seem to be worse, too, with me off the PD meds. Generally, I see an increase in jerkiness that moves from place to place as I consciously try to stop it elsewhere.

We haven't told anyone in the family about this possible change in diagnosis, and don't intend to, until it has been confirmed, and hopefully, we have a name for what is wrong with me.

I am going back on my Zelepar and Requip at 3:00PM today, and will stay one them at least until all the holidays are over with, and I am dismissed from PT. I probably will try going without again in February, just to see how I am doing then.

I wrote once before that having a neurological disease is like being in a clinical trial of ONE. It becomes very difficult to manage all the possible variables, and come to any kind of conclusion about the level of disability and what improves or aggravates the symptoms.

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.

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!

Can't Make Up My Mind

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

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

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

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

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

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

Daughter's Gastric Bypass Horror Story Continues

Our older DD had Gastric Bypass surgery over 2 years ago now, and her health problems from it continue to show up. All last year she battled with Peripheral Neuropathy so bad that she was almost not able to walk at all. She was in and out of the hospital something like 50 or 60 days last year, while they tried to bring her nutrition level up to a point that her body could recover. She thought she was over all that, even though it meant she had to gain back a lot of the weight she had lost.

During that same time period, she was having constant problems with crumbling teeth and abscesses. Now, the dentist tells her that the real problem is that the jaw bone is deteriorating, so the roots of the teeth are not stable. He is planning on pulling them all and putting her in dentures.

And, now, on top of that news she received this week, her eye exam showed serious problems, which they thought at the time was weak muscles from the Neuropathy. So, she went to an ophthalmologist, who says she has holes in her retina. She now has an appointment with a retina specialist.

To say the least, she is overwhelmed. We spent a long time on the phone last night with her sobbing away, and understandably so. When she decided to have the bypass surgery, we did all kinds of research, and at the time it seemed like the best way to improve her quality of life. Obviously, that was not the case.

I realize there are people out there who are so morbidly obese that they are existing, not living, in their present condition. DD's health was such that she was in serious danger. But now, it's hard to think that she (we) made the right decision.
If you know anyone who is considering this surgery, please let them know that there are people who have major regrets about it.

Standing MRI & A New Friend

I had the standing MRI yesterday, and that was quite a bit different from the lying down kind. First of all, it would be much better for anyone who is claustrophobic, as I was not closed in, and they actually had a big screen TV set up so I could watch it.

As far as my procedure was concerned, it was not very comfortable. The whole point was to take the MRI while I was putting weight on the knee, so I had to stand at about a 60 or 70 degree angle, I would guess, and be very still for about 30 minutes. By the time it was over my knee was really complaining, but it was worth every moment of it, if it gets them a better idea of what's going on in there. I still don't expect it to be torn cartilage, but soon I will know. Their brochure showed pictures of regular MRI views vs their stand up kind, with obvious disk problems that didn't show up when the patient was lying down. I may ask for that kind the next time I have to have one on my neck or back, for just that reason. I'll see the Orthopedist next week to get the report on it.

I've added the beginnings of a section on Radial Neuropathy to my side bar, not because I have that, but because I've recently started emailing back and forth to a new friend who has it. She and I live in the same small town, I taught her husband, know her MIL, and we're even members of the same church. And neither one of us knew each other LOL!! It was the Physical Therapist we've been going to, who gave her my blog URL, that got us together. She promises that she'll be posting here, so hopefully she can make contact with others who have problems more similar to hers. My Neuropathy is most noticeable in my legs, although my hands and arms are involved, too. Hers is severe, but I'll leave it to her to explain it.

I noticed the nausea from the Requip about 11:00AM again yesterday, but a few crackers stopped it. I'm still getting sleepy at the wrong time, as I nodded off early last night watching TV, and I've been up since 4:00AM. Actually, I woke up a little after 3:00, but I made myself stay put, thinking I would go back to sleep. No such luck.

I can't tell any difference in my gait yet, but it may take a week or so before I would notice anything, anyway. I don't remember reading anything about how long it takes Requip to take effect, so I'll have to try to do some research on that.

Oh, remember when I was having so much trouble typing? That has definitely improved. It must have been the stress of dealing with Daddy that was making that worse. Parkinson's folks don't handle stress as well as others do. I still make more mistakes than I'd like, but nothing like it was for awhile there.

I've done my morning exercises, but we're still not walking at the track. Hubby's poison ivy is getting worse, not better, and he's so stubborn I can't get him to go to the doctor about it. So he's just slathering on the anti-itch medicines I already had in the house, and he's trying to stay cool.

Speaking of cool, my temperature regulator is all off whack. I'll have hot flashes one minute and be freezing the next. I'm putting my jacket on and pulling it off constantly!! This is a Parkies thing, too, so there's not much else I can do about it.

I'll spend the day today writing descriptions and finishing the pictures I took this morning, so I can put some new items on eBay tonight. DH has gone grocery shopping, a regular Wednesday morning routine of his, and a chance for him to stop and chat with his buddies. I guess that pretty well catches me up for the day. I hope you are having a good day, too.

Starting Requip Again - Stopped Physical Therapy

Yesterday was my last time for Physical Therapy on my knee for now. I called my insurance company, and they only allow 15 PT visits a year, unless THEY approve the extra ones, and I've used 7 of them already. So, I figured I'd better leave myself with some, in case I have other problems before the end of the year.

I asked her about using the mini trampoline we have, and also a little stepper and an exercise ball. Her concerns had to do with balance, but other than that, she thought they would be fine. She said the stepper was a particularly good one for a PWP, because of the repetitive alternating motion. Of course she cautioned me to go slow about adding minutes to it, and to rest every other day or every two days. She's very emphatic about reminding me that the Parkinson's means I have to rest my muscles more than other people would need to. But she emphasized that I need to be on a regular exercise program the rest of my life.

I did start on the Requip again yesterday. Even though I've been doing all this exercise and my legs are definitely stronger, I'm still walking very slowly. It's called Bradykinesia, and it's always been my main Parkinson's symptom. Requip has some pretty uncomfortable side effects, as most of the PD meds do, it seems, so I really tried to do without it. But I just don't think the Zelepar is enough on its own. Dr. S. told me to use my own judgment on starting it back, so I've decided it's time.

I did get nauseated before lunch yesterday and I had a headache last night. Plus, this morning, I got light headed while I was taking pictures for our eBay listings. I stood still too long, I guess. Anyway, I had to stop and sit down, as I broke out in a cold sweat and could feel myself getting woozy. The worst side effect for Requip, though, is compulsive behavior - if that starts up again I won't be able to use it, for sure.

The PT worked me pretty hard yesterday, knowing it was my last visit, and I was very uncomfortable last night. I ended up taking 2 Lortab to stop the pain in my legs. At least that meant I got a good night's sleep! They don't seem to be as sore today, so that's good.

I'm having the MRI today at a different place, called a Stand Up MRI. That will be a new experience. It makes me wonder if that was chosen to get a different view of my knee, as there is a regular tunnel MRI place in the same building with my doctor.

I just realized that I forgot to call the Orthopedist's office yesterday to make the follow up appointment. I'm really having a hard time remembering to do everything that needs to be done nowadays. Hubby tries to help me keep it all straight, and I make lists like crazy. I've even started using the task reminders on my Outlook program to try to help. Of course I have to remember to put the reminders in the program LOL!

I got an email from the other PT patient who has Neuropathy last night, and of all things, we live in the same town!!! I'll be doing some research on her particular type of Neuropathy and adding links to it, if I can find anything specific for her. I wonder if she lives anywhere near the EPA toxic site, the way we do????? She's in far worse shape than I am, and the doctors don't know what's causing her problems, either. And she's young. I've added her to my prayers, and I hope she and I can continue to correspond.

It was a day of changes yesterday, but hopefully they will be good changes. Only time will tell.

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.

Physical Therapy Continues

I am shocked at how weak my right side has become. And a little scared, too, as I can see that I'm going to be in need of care giving a lot sooner than I had imagined, if I cannot regain at least a reasonable amount of my muscle strength. The PT has been very kind this week, and has allowed me to take the time to do the leg exercises on both sides, even though the "prescription" from the doctor only addresses the right knee. Actually, I don't really think the knee is the problem, only the result. The real problem, which is definitely the case on both sides, but more so on the right, is that my hip muscles are extremely compromised. That's causing the unnatural gait and putting the extra strain on the knee. The right one just complained more because of the stress shifting Daddy in the bed caused.

My shoulder is definitely improving, so that's something to be pleased with, anyway. She didn't even work on it yesterday, except for the electrical stimulation and moist heat therapy at the end of the session. I spent two hours there yesterday, just working on my legs and hips. Plus, we walked yesterday morning, and I did 3/4 of a mile, with the cane.

She wants me to cut back on the walking every few days to one or two laps to give my muscles a chance to recuperate, so I'll just sit and watch DH finish his laps on those days. She tells me that the Peripheral Neuropathy causes my muscles to fatigue faster than normal and bounce back more slowly, so I have to be careful to not overdo each set of exercises and rest longer between them than other people would need to.

We chatted while I worked, and it seems that she has another patient right now with idiopathic PN, too. Idiopathic just means the doctors don't know what's causing it, which is true for me, too. Anyway, I gave her the address for this blog to pass along to her, and I hope she does stop by. I know it helps me to chat with people with similar problems, and it's very hard to find much on the Internet about Peripheral Neuropathy that's not caused by diabetes.

My hip sockets and upper thighs ached the rest of the day yesterday, so I ended up taking a Lortab to get to sleep last night. I do feel better this morning, though, and we won't go to the track today, since it's our Date Day. That will help my muscles rest and rebuild. She wants to see me two times next week, again to allow more time for the muscles to rest before the therapy sessions. Of course, I have my list of home exercises to continue, so I'll still be getting therapy.

Oh, another thing I did yesterday was to stop and buy new bottles of my Centrum Silver and vitamin C+D. I found out at the eye doctor's office the other day that not everyone can dissolve the wax that's used to turn medicines into pills. That means some people pass the pills straight through their body without even getting any benefit at all. I had heard that before, that sometimes when septic tanks are cleaned out they are full of pills! So,to get maximum benefit, he told me to change to capsules or gels. Centrum doesn't seem to come that way, so I got the chewable ones instead, and I found the C+D in gells. She also said I was not taking enough of the C for my Osteopenia (loss of bone mass that is not as bad as Osteoporosis), so now I'll be taking those twice a day. She warned me not to try to just take one huge dose, though. She says the body can't absorb more than about 500 units at a time.

Sorry to sound so depressing today, but this has really slammed home to me how much function I've already lost, with no way of knowing if I can regain it. I can only do my best to follow the PT's directions and hope for the best.

Peripheral Neuropathy Rears Its Ugly Head

I went to the Physical Therapist this morning for evaluation of my knee and shoulder problems. The news was not good. It seems that I have significant weakness in my right leg and hip muscles, and also in my left hip muscles. My hand strength was markedly less in the right hand than the left, but that didn't surprise me.

She said it was no wonder I was having trouble with my knee, or with walking, as my muscles were so very weak. She does not want me to walk so far at the track, but to concentrate on walking with full use of my hip muscles. I had already realized that I wasn't doing that. When I do take a full stride from the hip I feel like I'm drunk, with a wobbly unsteady sensation. I don't know any other way to describe it, and I look drunk, too. She wants me to use my cane on a regular basis, because she doesn't want me to reinforce my unnatural gait. I'm to see her two more times this week, plus she's given me a set of exercises to do here at home.

She thinks the knee is so irritated because the muscles that should be providing support just aren't doing their job well at all. And she said the same thing about both hips. So, I'm going to be busy trying to build up what I can, before I end up on the floor LOL!!

I also had an ultrasound treatment on my knee and an electrical stimulation treatment on the shoulder and the knee, with moist heat, too. That felt wonderful, and it's supposed to improve and speed up the healing process.

The PT is a very nice lady, and I felt comfortable with her immediately. It's just as well, as it sounds like I'm going to be going there for awhile. Of course, insurance has a lot to do with how many sessions they'll let me have, so I need to learn as much as I can about how to do the exercises at home.

A New Year & Renewed Hope

Today is the first day of a new year, and I must say, I'm glad to see 2006 over and done with. Not many years in my life have involved as many health related problems as last year did. My DH and I both had surgery, and our older DD spent months recuperating from Peripheral Neuropathy, caused by nutritional problems from previous Gastric Bypass surgery. I stayed with her each of the many times she went to the hospital, and I also stayed with her at her house, helping her with a gastric feeding tube, which did not work properly, and was eventually removed. On top of that, I was diagnosed with Parkinson's and Peripheral Neuropathy. And then, the day after Thanksgiving, my 101 year old Daddy fell from what must have been a light stroke. He can no longer take care of himself, so DH and I have been taking turns staying with him ever since, with the help of Hospice and a hired part time sitter.

So I have high hopes for this New Year of 2007. I figure it's time we had a quiet year. We survived last year, through God's grace, with our sanity more or less intact, but with our faith definitely stronger. What's that expression that Neiche(sp?) gets quoted on all the time? "That which does not kill us, strengthens us." I think that's correct, and I certainly believe it.

I'm still pleased with the combination of Miralax and glycerine suppositories, as my digestion PD symptoms have improved tremendously. Tomorrow is my last day to be on Requip, and then on Wednesday I'm going to start taking Zelepar. This is really the first time I've tried a Parkinson's medicine when my digestive system was settled down before I started taking the new meds. At least the Zelepar will have a decent chance of working, without tearing my stomach up!

So I start the New Year full of hope and expectation that it will be a good year.

I Don't Want to Jinx It, But ....

I think I'm better! I didn't dare write anything yesterday. In fact, I was in a bubble of enthusiasm all day, afraid to say the words out loud, for fear it would burst the bubble, and my legs would feel like two ton weights again, slogging through mud.

I've been on the Sinemet since Monday night, and I woke up yesterday walking amazingly better. I wouldn't call it normal, but for me, it was a vast improvement. I was also aware of being happier than I have been in quite some time, but then who wouldn't be! I noticed that even my upper body movements were faster, which I really hadn't realized had slowed down.

I think I spent every spare minute all day long thanking God for this miracle. I really over did the physical work, though, as there were so many things I've put off doing, because I just haven't been up to it. I'd work for awhile, and then rest, and then work awhile longer. My leg muscles are telling on me today, for sure, but I'm proud of what I was able to accomplish yesterday.

We didn't tell anybody at church last night, and I still used the walker. I don't want to say anything until we get an actual diagnosis, and that will be on my next appointment. From what I've read, Parkinson's symptoms can fluctuate, so one moment can be better or worse than the next, so for now I don't want to have to explain.

We have decided that if we don't find one of those adjustable canes with the extra legs on the bottom at an estate sale tomorrow, we're going to buy one. At the rate I'm going, I may not need the walker much longer. My balance is still not good, so I'll use the cane, and we'll keep the walker in the car, in case this doesn't last. That's the plan for now, anyway. The balance thing is probably from the Peripheral Neuropathy, anyway, and I don't think he can do anything about that, except to monitor it to see if it progresses or improves.

If I Could Dance ... I Would!!!

I went to the Neurologist today, and I feel like I had a very productive visit this time. He is agreeing with the diagnosis of Peripheral Neuropathy, but he thinks something else is going on at the same time, as not all my symptoms seem to fit that diagnosis. First of all, the heavy metals test came back negative, so we don't have to worry about the EPA site, at least. All the other blood tests came back OK, too. One test is having to be done again, as the lab goofed on that one.

Anyway, he's given me a prescription for Sinemet to take for three weeks and then see him again to see if it makes a difference in my walking. This is a Parkinson's medicine, which is what I've thought he was thinking all along, since Mama had Parkinson's. She didn't have tremors, and I've only had some shakiness when I was weakened by the colitis or really tired.

I finally feel like I'm getting somewhere!!! At least in 3 weeks we'll know if it's Parkinson's or something similar, and I really think it is. I'm looking forward to being able to walk better. I know I shouldn't be getting my hopes up so, but right now I'm almost ecstatic!

Heavy Metals Tests & Access Problems

Yesterday we turned in my 24 hour urine catch to the lab for the test for heavy metals. Since we live within a quarter of a mile of what the EPA called one of the worst toxic waste sites they ever had to clean up, we're very anxious to hear the results on that one. Obviously, there are several metals that could cause the PN, so this is a key test. I started to just let DH take the container back by himself, but it's a good thing I didn't. They had such a hard time drawing blood Thursday that one of the vials had clotted, so they had to draw more blood from me yesterday. That would have been terrible, to go to the doctor next week and not have all the tests completed.

I'm finding the oddest places that I'm having trouble navigating with the walker. The door to the bathroom at the hospital lab was so heavy that I couldn't get it open and get the walker through it, too. DH had to get up and hold the door for me. Then, when I got in the bathroom, there was no hold bar -- in a HOSPITAL bathroom! I couldn't believe it! We got the phone number of the maintenance department from the lab people. That was the only number they could give us, figuring they would know who we would need to contact to complain about the bathroom not being compliant.

We went to an old Wendy's for lunch, and it took 2 people to hold 2 sets of doors open at the same time to get the walker through the vestibule doors, the way they opened on each other. That's crazy!! Nobody in a wheelchair would be able to get in that place alone. They're going to get a call, too. We've been talking to managers for years about maneuverability issues we saw pertaining to wheelchairs, but we've obviously missed some in places we never took my mother. You just don't notice things like that until you are confronted with them yourself.

Is My Mind Playing Tricks on Me??

Another reason I'm afraid of using a walker in public is that I'll be setting myself up for future embarrassment. I'll have to explain that one.

My original back flare up, that precipitated this difficulty walking, was caused by spending the better part of this last year taking care of our older daughter, as she was in and out of the hospital something like ten times for about 60 days total. I stayed with her constantly with each hospital trip, "sleeping" in a recliner, and my back paid for it.

I took care of her at home in between hospital visits, too, often getting up in the middle of the night for hours dealing with her needs. I all but single handedly packed and unpacked their things, as the apartment our SIL and she were in was not handicap accessible. The apartment people moved them from one apartment to a better one that she could get in and out of easily, and it had an extra bathroom, too, which was a big help. All that packing and unpacking took its toll on my back, too.

I survived by just about living off of Goody powders that whole year, as I kept a backache and a headache almost constantly. So why am I worried about being embarrassed??

Our daughter developed Peripheral Neuropathy as a result of nutritional deficiencies from Gastric Bypass surgery that she had had almost a year and a half before. In a matter of a couple of weeks, she went from noticing being a little clumsy to not being able to hardly stand at all!! It took them quite a while, with lots of second opinions and tons of tests to decide on a diagnosis and course of treatment, but she's doing fine now.

What worries me is that the stress of all this may have caused me to develop a psychosomatic illness, triggered by the very real pain I was experiencing from my herniated disk. When the epidurals took care of the pain, the walking did not improve. Here I am, with Peripheral Neuropathy, after helping our DD, who has Peripheral Neuropathy?? Sounds a little fishy to me, don't you think?? Oh, and before you jump to a wrong conclusion, dear reader, she's adopted, so that rules out a genetic link.

Our family knows just how much stress I have been under for some time, as I have been the care giver for my mother and FIL with Alzheimer's, my DH with cancer, and have had surgery myself, besides taking care of our DD. I've also been the main care giver for my Daddy, who is now 101, lives by himself, and is legally blind. Yes, he's amazing!

My family will understand if I am suddenly "cured", because it turned out to be all in my mind, and not a physical problem. I'm not so sure others will be so forgiving, but will think I was trying to get sympathy or something, using the walker when I didn't "need" it.

A Personal Journal

I've been waiting for six weeks to see Dr. S to find out what he thinks is wrong with my legs. I tried to remember everything I could that he might possibly need to know about my past history. I still forgot to tell him about the Bolt Factory and the functional dysphonia diagnosis I had before I quit teaching. I also forgot to tell him that I taught Chemistry for a few years, but I really don't think that has anything to do with it at all. I did give his nurse my notes about that when we took the old back films to them. But I'm still forgetting to tell them about Uncle Bill!!

He did the kinds of hammering around that I expected and said that I definitely had diminished responses in my legs, but the upper body responses seemed normal. He was sorry that the EMG I had already had did not include any tests of the upper body and wants to repeat that test. He watched me walk, asked DH if I were that slow with everything I did, which I'm not. I did tell him I feel the shakes at times with my hands. I definitely have trouble handling pills and money, and my memory is not as good as it used to be, either, but then I'm not as young as I used to be, either.

I told him about the MRI Dr. Stan had done years ago that showed increased CSF pressure and the negative Babinski test, so he wants a repeat of the brain MRI.

He showed us what a Parkinson's walk typically looks like, and that's not what I'm doing. I'm not walking like the typical Peripheral Neuropathy either, so that's the puzzle of it. I told him about my concerns that it might be psychosomatic from worrying about DD so much and being with her through all her PN hospitalizations. He said that would be the diagnosis of last resort, if I understood him correctly.

Anyway, now I'm trying to be patient while HealthSpring takes their beaurocratic time processing the request for a brain MRI and a repeat of the EMG to include the upper body as well. He wants to do a series of blood tests, too, to check for B12 deficiency and toxic metals I'm guessing.

I liked him and I have confidence in him.