Tag Archives: stress

Re-Testing Peripheral Neuropathy Monday

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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.

Twitching Along ….

Day by Day with a Movement Disorder Posted on by 4

We went on our usual Date Day today and visited three Estate Sales. Two were complete duds, but the last one was fun. It was an old country house chock full of a lifetime of collecting all kinds of odds and ends. We both enjoyed ourselves there, and then we stopped by our usual Thrift Store haunts in that area and found enough plush lovies to more than make the day break even. It’s fun having a hobby that pays for itself, plus helps other people, too.

We had our second meeting yesterday with our new Financial Adviser, in the process of deciding how to best protect our future and be sure there is money in place to take care of our needs. Our daughters know that we do not want to go to a Nursing Home, but realistically we can’t assume they will be in a position to keep one or both of us at home, the way we did our parents. That’s way too much a burden to blithely assume someone else will tackle. That means considering Long Term Care Insurance and putting money aside to pay for in home care if at all possible. We’ve paid out enough over the last ten years to know what is involved, and it’s certainly not cheap.

He went over several different options with us, and I was having a really hard time following the differences, pros, cons, etc. So was hubby. We asked lots of questions, some several times, and he patiently went over each concern. We left with several brochures, still not sure of what we need to do. We’ll see him again next week, after he’s had time to pursue the options we were most interested in. There will be a Long Term Care expert at our next meeting, too.

We won’t be able to settle some arrangements until I have a diagnosis. After all, what new insurance company would insure me for anything when my own doctor can’t say what is wrong with me! So, for now I am stuck with the insurance I already have, and we can only do the research for more appropriate kinds.

Did I say stress makes my twitches and tremors worse? Yep, you guessed it. By the time we left I was grimacing and shaking like I was keeping time to some peppy music. Hubby even asked me if I was doing my hand on purpose, because it really did look like I was in tempo with the CD. But no, it was my body doing its own little dance duet. I “cured” the nerves the way I always do …CHOCOLATE!!! Hubby knows what to do, so we stopped and I gorged on brownies. Better than any tranquilizer I have ever used, as there is no spaced out feeling afterwards. 😉

Still Doing Without Parkinson’s Meds

Day by Day with a Movement Disorder Posted on by 2

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.

Odd Physical Therapy Today

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I went to PT this morning, and they did start me on some exercises, all for my arms. The first few were fairly easy, but then she had me pushing down with what seemed like more resistance than the others were set for. I stopped at the first set of ten on that one, instead of doing two sets of ten the way I had done all the others.

Then I moved to the pulley rope, which I’ve done before with other therapy, and it’s always fairly easy, unless you just can’t raise your arms. I had no trouble with that at all. Problems came when I stood up from that one, though.

I woke up this morning trembling more than usual, and getting into the cold car this morning just made it worse. And then I did all this new exercising on top of that. I guess everything just worked together to bring major big time tremors in my legs and arms, all at the same time. I was frozen in place, unable to move, because I was just not in control at the moment. The Aide immediately pulled a chair over for me, and I didn’t do any more exercises. They hovered over me for awhile, with me assuring them that I was OK, that it would ease off on its own, that there wasn’t anything they could do, and I really was OK.

After I convinced them that I was not going to fall, they moved me to the room where they do the ultrasound and heat therapy with the TENS machine, and everything went as usual. About half way through all that, the tremors settled down to just the usual quiver in my right arm and leg.

The only thing I can think of is that using the machine that was apparently set with too much resistance for me to handle just used up the dopamine I had available for a little while. It will be interesting to see if I can find anything to agree or disagree with my hypothesis.

It’s been a shaky afternoon, and I just gave in to my chocolate craving – that’s my way to deal with stress, as any chocoholic will tell you. And my neck is sore, but not painful, from the exercise. But at least I’m walking around about like usual – maybe a little shakier, but not much.

She told me I have 3 more visits before I have to see the Orthopedist again, so I need to make that appointment. I should have done it today, but I’m in one of those procrastinating moods today, and I just didn’t feel like doing it. These moods don’t make any sense, but I get into them every once in awhile. Things that happen like this morning seem to bring this apathy on, like everything is just too much trouble. It’s stupid, I know, but it’s just the way I get at times. I’ll snap out of it, just as the shakes finally stopped. Just takes a little time.

Tomorrow is Date Day, and it will be a better day. I’m sure of it!

Back on the PD Meds

Day by Day with a Movement Disorder Posted on by 8

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.

Doing Without PD Meds Today

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I just have to answer this one for myself, before I drive myself crazy. I didn’t take my last PD med last night, and I haven’t had any this morning. It will take awhile for the meds to flush out of my system, but I need to know what I look like without them. It’s just like most of the meds you see advertised on TV. Take this pill to stop twitching, but oh, by the way, this pill can cause twitching!!! So, if I didn’t need them, they would give me the same symptoms as someone who did need them. Like I said, my brain is going around in circles over this, so I may not be making good sense right now.

I’m going to be in the house all day today, and I wanted to settle my mind on this before it was Christmas. It wouldn’t do me any good to try to wait until after the New Year to experiment, because I start physical therapy for my neck on Jan. 2, and I sure wouldn’t want to be playing around with my dosages then.

Of course I am still on all the other meds I take, for my digestive system, allergies, and bone density, plus the vitamins and herbs for general health and anti-oxidant benefits. Who knows, maybe that’s all I need to be on, anyway. I hope to find out with this little experiment.

We will be spending time with our older daughter and son-in-law here in town Christmas Eve, and then we’ll drive to our younger daughter’s home to spend with our grandchildren and her hubby. Then, a few days later, we’ll be driving back for our grandson’s birthday.

I don’t want this nagging doubt hanging over me. I want to enjoy this family time, and the celebration of the birth of Jesus, without obsessing over this, the way I have the last few days. So, it’s do without today, and maybe tomorrow, too, or wait until February or so. And I just emotionally can’t wait that long. Did I say that patience is not one of my virtues?

Still Having Problems, But I’m Sleeping Longer!

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

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

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

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

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

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

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

7+ Hours Sleep Again!

Day by Day with a Movement Disorder Posted on by 8

I was able to stay in the recliner for over 7 hours last night! I’m still getting up several times to go the bathroom, but at least now I’m able to get back to sleep. I figure I’ll try turning the screw to advance my lower jaw maybe one or two more nights, and that should be enough. I’m making the Sleep Study appointment today to see if it’s controlling the Sleep Apnea properly. If it’s not, I can always advance it some more while they monitor it, until I find the right spot.

I will get an appointment for the flu shot today, too.

I’m also going to make an appointment with a Dermatologist today. I don’t want to ignore the fact that Parkies have a higher rate of Melanoma than the general population. Particularly since I’ve inherited a tendency to have lots of moles, some quite large, from both of my parents.

I’ve never been to a Dermatologist before, but I’ve learned my lesson and intend to get one who uses the hospital I like. There is a lady Dermatologist associated with my preferred hospital, and I think I would be more comfortable having every square inch of me examined by her, rather than by a man.

My inability to control my emotions is still a very aggravating problem. I started looking for some important insurance paper work this morning, and couldn’t find it. I’ve kept up with that stack of papers for several years now, but when I started to make a phone call referring to it, it was nowhere to be found. After searching everywhere I might have filed it, then looking in places I should not have filed it, I fell apart. Blubbering like a baby and getting DH all upset trying to console me. This awareness of my mental abilities deteriorating right before my eyes is extremely disconcerting.

I finally did find the insurance papers I needed, stuffed in the file folder with the information about Pop’s monument that I had worked on the same day I had been working on the insurance. This is some paperwork left over from when DH’s Pop died, as we were the executor of his estate, too. Not long after he died my dear hubby had colon cancer surgery, so some of the less urgent parts of settling Pop’s estate just got pushed to the background. Now I’m trying to finish all of it up, and get my Daddy’s all finished, too.

So, all in all, it’s been a productive day, as I was able to get done what needed to be done toward cashing the insurance policy, and I’m going to call and make the appointments just as soon as the doctors’ offices get back from lunch.

Once this insurance policy is dealt with, the only things left to take care of are the monuments. Pop’s should have already been engraved, so when I talked to the cemetery people, they were extremely apologetic that it had not already been done. And I haven’t even started on getting Daddy’s information added to the headstone.

I’ll be glad to have all this paperwork finished! Daddy’s estate will get out of probate at the end of November, and I need to be through with everything by then, so I can quit stressing over it.

Startle Reflex Does Me IN!!

Day by Day with a Movement Disorder Posted on by 6

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

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

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

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

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

Earliest UNDIAGNOSED Symptoms of Parkinson’s Disease????

Day by Day with a Movement Disorder Posted on by 35

Hi Rosemary

First I want to thank you for taking the time to blog. You may not be aware of important I find it to hear others Parkinson’s and day to day life experiences. I appreciate it very much.

I am writing to you because my interest in PD came because I began having symptoms which I suspected might be PD. Fortunately my symptoms are very irregular and inconsistent and not at all affecting my ability to function. The Neurologist I am seeing is not good and is pretty much dismissing my symptoms as nothing. This is fine with me or maybe wishful thinking. I will have resting tremors in my left thumb on occassion as well as jerking limbs, and muscle trembles throughout my body, weakness, etc. Again there are very inconsistent and really could be normal daily problems or another issue. I am very much into Holistic and Natural health so have been doing many things to minimize or slow and potential problem I have. I am 45

I started looking for blogs to see what people reported as initial symptoms long before they were diagnosed with PD. I suspect my symptoms maybe be things people have looked back after they were diagnosed and say yeah, now I remember I had problems long before I realized there were problems. I cannot find such a blog and I am really curious as to when you reflect on your past, when did small signs begin to show up and just ignored or dismissed them. Or whether you had inconsistent symptoms at first. I could be completely wrong, I have no idea!

So after that long winded explanation I have a request. If you have the energy and time at some point, I would like to see a blog from you of your very early years working up to PD. No pressure and no hurry. It would be very much appreciated.

Keep up the blogs and my prayers are always with you

Ted C

Ted wants me to try to look back and pinpoint some of the earliest signs that may have been Parkinson’s symptoms that the doctors missed. I’ve mentioned several things in other posts about what I now believe were warning signs that were not detected. I’m not criticizing the doctors about this, as hindsight is always better than foresight. There’s absolutely no way of knowing if I’m correct on any of the possible signs or not, but I’ll try to list as many things as I can remember that were puzzling at the time and went undiagnosed or ignored.

I really do have back problems that are unrelated to Parkinson’s, as I have Degenerative Disk Disease. There have been many trips to different doctors over the years with back pain and weakness in my legs. There were times as long ago as 15 to 20 years ago when I was walking slower than my parents, who were in their 80’s at the time. Doctors were able to alleviate the pain with epidurals, but the walking problem always gradually disappeared on its own and then returned just as mysteriously.

I’ve had spells of mental fog for many years, which I always blamed on female hormone problems, as I was very young when I had a complete hysterectomy, or on the stress of teaching and later as a caregiver. I was on hormone replacement therapy all that time, though.

I had a diagnosis of Functional Dysphonia while I was still teaching, which means that I could not talk at all, but it was supposed to be psychosomatic. The doctor attributed it to stress. I had bouts of severe laryngitis over a period of many years. I had always been in the choir at church, but about 15 years ago I reached a point where I could not sing through a verse without feeling like I was being strangled, with someone squeezing tightly around my neck. My breath volume was greatly diminished, too.

I went through several years of Migraine Headaches. The Neurologist I was seeing at that time found that I had a positive Babinsky reaction, which means my toes didn’t do what they should have when he scraped along the bottom of my bare foot. He concluded that I had probably had one or more concussions from childhood falls. He did not cure the headaches, but the episodes finally slacked off on their own.

I had a very scary episode about 15 years ago in which my left arm went totally to sleep one night while I was watching TV. It took a lot of massaging and soaking in hot water to finally get feeling back in it. When I went to the doctor about it, she diagnosed me as having Mitral Valve Prolapse. Some years later, I had an echo cardiogram, and there was no indication of MVP. I still have to be careful that I don’t keep my hand too still when we drive for any distance, as it will still go to sleep. The same thing happens in the dentist’s chair. These symptoms are probably from a spur on a cervical vertebra, but who knows??

One symptom that I had never gone to a doctor with was the way I would think I was smiling when my picture was taken, only to see that my face was blank when I saw the photo later. That is a definite Parkinson’s trait, and it’s been something that I was aware of for many years.

There may be other symptoms that I’ll think of later, but I’ve read this post to my DH, and he’s in agreement that these are an accurate list of some of the puzzling things that have happened to me over the years. I hope other Parkies will contribute to this post, too, so it will be as informative as possible.