Day by Day with Parkinson's and Peripheral Neuropathy

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

Sunday, February 03, 2008

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.

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Wednesday, January 23, 2008

Pinched Nerve in Neck is the Culprit

I went back to the Orthopedist yesterday for the follow up on the Physical Therapy I've been getting. He says I have a pinched nerved on the left side from a bulging disk. It's all part of the Degenerative Disk Disease problem I have with several different cervical and lumbar vertebrae. Anyway, since I cannot have epidurals, he is making arrangements for me to see a Physiatrist at the Lakeshore Rehab Facility. This place is a Paralympics training facility and very highly thought of. It will take several weeks before I even get the appointment, as the doctor evaluates all the info my Ortho sends him, before he decides IF he will see me or not! Talk about a busy doctor!!! So, it's hard to say who I will see first, the Physiatrist, or the MDS at UAB. Either way, I'll be getting help from some extremely well thought of doctors, and for that I am very grateful.

In the meantime, he gave me a prescription for the Home TEN's, which my PT facility can fill tomorrow. And he also sent me home with an inflatable cervical collar that provides traction. It's not at all comfortable, as I have a very short neck. Even the small size seems too big to me. I'm to take it to PT tomorrow, so they can help me learn how to use it correctly. Then maybe it won't be so uncomfortable. The directions say to inflate it for 10 or 15 seconds, deflate, then inflate again, for the first week, leaving it on for no more than about 15 minutes. Then I gradually work up to a steady 15 minute session with it.

The PT also told me the other day to make the neck exercises a consistent part of my daily routine, whether they seemed to be helping or not. He said it could be months before I really saw improvement, but to continue indefinitely with the routine they gave me. They're easy enough to do, so it's just getting it to be part of my day's routine that remains to be accomplished.

So, another piece of the puzzle has been explained, and now I wait to see the Physiatrist for an evaluation, as well as the MDS at UAB. Looks like this is going to be an interesting year, and I choose to believe it will be a year where I get help with my pain, stiffness, and walking problems. Who knows, maybe I'll even stop shaking!

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Sunday, January 20, 2008

Getting Back to "Normal" and Doing Some Soul Searching

I didn't have any lasting bad effects from the Physical Therapy last week, and my neck continues to improve. The pain is essentially gone, although I do still have some stiffness, and certain activities still hurt. At least I am not hurting when I'm doing nothing!

I continue to limit my reading about Parkinson's, but it sure is hard to intentionally stay away from Parkie friends I value so much. I had intended to stay away until I had the appointment with the Movement Disorder Specialist (MDS) in April, but I just couldn't do it. They are too much a part of my life now. If I am diagnosed with something besides PD, I plan to keep up with them anyway. I did stay active in the Alzheimer's caregiver forum I belonged to for quite awhile after our parents died, but I did finally quit visiting. Life moves on eventually.

I had another choking episode with a pill a couple of days ago that was really bad. That particular pill burns in the mouth, for some reason, if it doesn't go down right away, and it burned in my throat when it got stuck. I ended up with a very sore throat that lasted until the next day. So, again, I've gone back to doing what my Gastroenterologist told me to do. Taking the pills in apple sauce instead of water makes all the difference. I'm just being lazy, and dealing with a heavy dose of apathy right now. That's the only way to explain that it's easier to get a glass of water than to open the fridge and get out the apple sauce and a spoon. I have gradually stopped doing several things he told me to do, and I need to get back to the straight and narrow, for my own sake, and my hubby's. He worries about me so, often without good reason, other than he loves me. I must try to do all I can to keep from getting myself into situations like this that scare him so.

There was a post on Patients Like Me today that has me doing some heavy thinking. Basically, it was about how many Parkies avoid being around those PWP who are farther along in their stage of the disease, because they do not want to be confronted with their own possible future. I know I fit in that category, as I have intentionally not even tried to find a support group, and I have turned down some invitations to meet some online Parkie friends who live in Alabama, too. It's one thing to read how they are doing, but quite another to see it for myself. I know that's the way I would react, because I freaked out when I first looked at a free DVD I ordered that had real Parkinson's people doing exercises. I haven't watched it again. It does help, knowing that other PWP feel this way, too, but it's not fair for those who are farther along, who are missing the support they need. It's a reaction I'm going to have to work on, but not until after I see the MDS.

As it always seems to be, I get better in one area and regress in another. I guess that's normal for everybody, right?

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Thursday, January 17, 2008

Odd Physical Therapy Today

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!

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Wednesday, January 16, 2008

Tummy's Back to Normal - PT Continues

It took a couple of days of very careful, limited eating, to get my tummy back to a normal situation, but I'm much better now. I've gone back to using the glycerin suppositories, and that's helping the most, other than to avoid some questionable foods.

I talked to my PT Monday, and told her my neck was much better, and that I was surprised they had not had me doing any exercises. She said they wanted to get my muscles calmed down first. So, she is going to add some tomorrow. I told her I wanted to be stingy with my visits, in case I needed to come for something else later on in the year, so she has me on Monday and Thursday now, instead of 3 days a week. Of course, that frees up our Date Day, and that suits me just fine.

I've been extremely busy trying to help all the families who have been asking for help find lost lovies, ever since the msnbc.com article came out about our Plush Memories Lost Toy Search Service. We had well over a thousand hits that first day, and our traffic is still about double what it was before the article.

I'm fighting the poison ivy again, and I'm not sure which one of us is winning right now. I have found that I can take one Benadryl at night, and that stops the itching until in the afternoon. Then I take a non drowsy type that the pharmacist said I could use. It doesn't work all that well, and by early evening I'm in misery. It gets in my blood stream or something, because I end up with rash and blisters in places that it should not be. Very delicate skin itches ten times more than arm or leg skin, I guarantee it!!!

I see the Dermatologist in another couple of weeks, so I will certainly ask him about anything I can do to dry it up quickly.

I think I know where the poison ivy is coming from. We've been bringing our outside cats in at night when the weather is below freezing. I am pretty sure I'm catching it from them. We had the brother and sister kitties neutered last week, and the little girl is somewhat frail, so we did not want to take any chances with the cold. The only other possibility is that the wood chips I'm using for the compost have the vines ground up in with it. Our back yard is just full of poison ivy, so that's certainly possible.

I'm continuing to limit my reading of anything Parkinson's related, but nothing has changed as far as my foot tremors and facial tics go. Oh, and I still haven't started back using the TAP. I decided to get my neck calmed down, plus see if the mouth tic was related to maybe my tongue moving around on the inside of the mouthpiece in my sleep, and it getting to be a habit. Well, the neck is calming down nicely, but the mouth tic is still there. So I think I can stop blaming the TAP for that.

Since I've been taking the Benadryl at night, I'm sleeping quite well, even without the TAP. Funny, the Benadryl is working much better than all the fancy sleep meds ever did, and I've tried almost every prescription they make at one time or another.

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Friday, January 11, 2008

Slept All Day Yesterday

I overdid it. We have been going more and more to fresh foods, mostly raw, for lunch. Our salads have been getting larger, while the amount of cooked vegetables has been decreasing. We've also had a few smoothies, including one the other day that was a total disaster. I made myself drink about 6 oz of it, because I just couldn't stand the thought of wasting all that food. Well, if I ever make one again that tastes yucky - it will make great compost!!

I was bloated on Wednesday morning, and I didn't feel like exercising at all. I did a little moving around, but quit about half way through the video. But I felt OK as the day went on. I should have paid attention to my body and gone back on my strict safe diet and the bowel retraining regimen I have used in the past. But I didn't listen.

By that night, I was nauseated and so uncomfortable that I used a Phynergan suppository and went to sleep early. I woke up about midnight coughing uncontrollably from acid reflux, so I started sipping on liquid Gaviscon to calm down my esophagus.

I slept until my medicine alarm went off at 5:00AM, was so groggy that I took the Zelepar and went right back to sleep. I kept on waking up for meds and going back to sleep most of the day. I went back to using the glycerin suppositories, too. I cut back on medicines to only those I thought were essential, and only had a couple of lightly buttered English muffins to eat all day. I managed some chicken soup for supper, and then slept all night again.

Surprisingly, I felt OK this morning. But I will be extra careful with my meals for the next few days, and will be using the glycerin suppositories again for awhile. My Gastroenterologist explained to me that I feel like that when I am constipated. The fact that I am still going to the bathroom doesn't matter, if I am not eliminating enough to keep my colon working properly.

I went for my Physical Therapy this morning, as usual, and we even did a little traveling for our Date Day. There aren't very many Estate Sales this time of year, so we ended up going to just two. Neither one of them was very interesting, but we did find some old toys that will pay for our day out, anyway.

I feel fine as I write this, but I had become complacent, I guess, since it had been so long since my tummy has bothered me. I learned my lesson this week.

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Monday, January 07, 2008

Physical Therapy Continues

I've been to a couple of PT sessions now, but all they have done so far is do the ultrasound and the TENS. My neck still gets very painful, if I have to sit for any length of time unsupported, such as at meals and at church, but already it is more flexible than it was. I see them today, Wednesday, and Friday. We went out last Friday for our Date Day after I finished the session, so I guess that's the way we will do it for awhile.

I goofed on my medicines last week and put the Sinemet and Lodosyn in the boxes, as usual. That's what my Neurologist told me to stop taking, and I forgot! No harm, really. But I made a big time bad mistake when I filled them this time. I put 4 diuretic pills in, where it should have been the colon relaxer pills!! I didn't catch it until that night, when I take the last Bentyl by itself. That's when I realized it was the wrong color pill. Makes me so mad at myself when I mess up like that. I'm just thankful I didn't get into trouble with all that diuretic in me!!!

I started this post on Monday, but the interview I did last week about our Plush Memories Lost Toy Search Service was included in an msnbc.com article that published yesterday. So, I spent most of the day reading requests from families who are looking for lost lovies, and writing everyone to tell them about being featured in the article. I was on cloud nine all day long. We were able to connect two of our searchers with families who had the toy they needed, and were willing to give or sell it to them.

I got mixed up on the timing for my meds again, but not too badly this time. It's just aggravating that it happens at all. I think it's a Freud thing going on - I'm just sick and tired of all these meds, no matter how much I know I need them.

I'm tired today, too, because I stopped using the TAP for a few days, thinking that would help my neck to settle down. Of course that also means I'm not sleeping as many hours. I figure do without it one week, and if that is going to help, that would be long enough to see a difference. I will use the TAP again this weekend, or maybe next Monday, one way or the other.

The excitement of yesterday has calmed down now, but I am trying to stay upbeat, hurting neck or not.

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Wednesday, January 02, 2008

First Physical Therapy Session

I went back to the same PT I have used before, and I was fortunate enough to get the same therapist. She asked lots of questions about what brought on the stiff and painful neck. She manipulated my head, and we chatted a bit about how my diagnosis got undiagnosed. I gave her the link to Patients Like Me, and I hope she takes me up on the invitation to join.

She seems to think that the electrical stimulation (TENS) and ultrasound will help these muscles relax, and she expects to do some stretching exercises on Friday. Bless her heart, but she remembered that Friday was our Date Day, and apologized for messing it up. But DH will be fine with that, as this is only for a few weeks.

We did something this afternoon we have never done before. I made a smoothie! Hubby bought me a blender for Christmas, because I had said something about wanting to try some. I mixed a banana, raw spinach, a little parsley, some soy milk, and a touch of honey, and we both tried it. It wasn't half bad, and we both drank it all. Not bad at all for my first attempt.

It always makes me feel better when I feel like I am taking control of a situation, and getting the PT started and learning a way to improve our nutrition is a good start for one day. Yippeeee!

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Sunday, December 23, 2007

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.

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Friday, December 21, 2007

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!

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Thursday, December 20, 2007

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.

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Thursday, December 13, 2007

Sitting MRI and a Full Night's Sleep

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

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

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

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

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

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Friday, November 09, 2007

Looks Like I Can Cross Sleep Apnea OFF My List!!

I have slept longer and waked more refreshed almost every night now for over a week with the dental appliance set to a very comfortable amount of lower jaw extension. I'm not having as much trouble with daytime sleepiness, except for the odd woozy feeling I get after lunch. So, unless something unforeseen happens, I am going to cross Sleep Apnea off my list of problems! That feels so good, to have one less thing going wrong with me.

My neck continues to spasm, so I guess in a way I have traded one problem for another. But I know that will either work itself out, or I can go to my Orthopedist and he will deal with it. If it has not relaxed by Monday, I will make an appointment. I suspect he will give me a prescription for some Physical Therapy. That's why I stopped going earlier this year when my knee was so painful. I wanted to be sure I had some PT time left, as my insurance only covers 15 trips a year, I think it was. Anyway, I know I have some sessions left, and that will be enough to get this painfully stiff neck relaxed, I'm sure.

I am in an optimistic mood, and have been for some time now. It feels glorious!! Even my elimination seems to be getting back to normal. The combination of Bentyl, the antispasmodic and mild antidepressant, the extra Metamucil capsule, and the Acidophilus, have done the trick. I still have gas problems, as I try to figure out which foods I will have to delete from my diet, but that is so minor a problem compared to what I was dealing with.

So, this is going to be a great day! I just feel it!!

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Thursday, July 26, 2007

Digestion Problems Worsen

I have an appointment with my Gastroenterologist for this next week. Even though I have faithfully taken the Myralax each morning, take Metamucil every day, have been on the Bowel Retraining regimen, using the glycerin suppositories, and I've been really careful about what I was eating, I'm still having bowel problems. For lack of a better word for it, I would call it constipation, but it's more like the colon and rectal muscles just are not working properly. Before I was diagnosed with PD last year, I had a four month bout with diarrhea that was very difficult to stop. The Gastro treated me with the same meds that would be used with colitis and Irritable Bowel Syndrome, so that may be what's going on now. From what I've read, the IBS spasms can cause some really strange symptoms, which fit mine fairly accurately. I won't gross you out with any details. Let's just say things are not as they should be.

Other than that, I can report positive improvement with my right knee, which I had twisted again. We took off several days from the track, I have been staying on the computer more and reading more, and generally letting it rest. I did walk 1 quarter mile lap yesterday, and another today. Mostly I've been doing the exercises that the Physical Therapist outlined for me. I'm thinking I probably need to get some kind of knee brace to use in situations that might aggravate it, such as the clearing out I was doing of Daddy's things that set this episode off.

So, I wait for the Gastro appointment, look forward to the Sleep Study next weekend, and baby my knee while it slowly heals. DH, as always, has been super considerate. He keeps me laughing over his foolishness and does so much for me. No one could ask for a more loving and caring helpmete.

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Thursday, June 14, 2007

43rd Wedding Anniversary!

How about that! Yesterday we celebrated our 43rd wedding anniversary. We've actually been seriously in love since 1960, but we waited for me to graduate from college before we got married. I wouldn't recommend that long an engagement to anyone, but getting my education was important, and it's helped our family financially all these years.

We went to a movie and ate out and generally enjoyed being with each other, as we always do. I would wish that all marriages could last so long with so much love still there after all the years.

It did get me out of the house and away from all these estate issues. We'll go to the bank today and open the ESTATE bank account and change over all the CD's to our name. That will be a couple of more things I can then cross off my task list, which is a very satisfying thing to do.

What with all the stuff we've been cleaning out of Daddy's house, I finally got up the gumption to clean out Pop's closet at our house. My FIL lived with us the last few years of his life, and when he died, I just couldn't bring myself to deal with his clothes. They weren't really in my way, so I put it off. Well, now I need the closet to store some of Mama and Daddy's stuff until we can sell it on eBay, so all of Pop's things are bagged up and ready to give to the Thrift Store. I will have to get the name tag labels out of everything, though, as he was in an Assisted Living home his last year, and everything is marked.

I've finally worked our eBay store back up to 250 items listed, which is about all we can afford at one time. Maybe now some other things on my To Do list can move up the line.

I did sleep longer last night, but it was because I took a Darvocet last night. The movie gave me a headache, plus I was generally achy all over. I think I've been over doing it lately, trying to box a lot of things up. Doing a lot more leaning over and picking things up than I have in a long time, and my muscles are complaining about it. Walking is great, but it doesn't take care of all the muscle groups. I have been doing some simple arm exercises with the 1 lb weights, and I've gone back to doing all the neck and shoulder exercises that the Physical Therapist put me on some years ago for the degenerated disk in my neck. I continue to do the Tai Chi, as well, so I'm really trying to build up my muscle tone. I do have a set of exercise videos that I bought several years ago, but that means getting down on the floor. Getting down isn't the problem .. getting back up is! LOL So, I'm postponing using them for awhile. I figure by the time the weather turns cold I'll be strong enough to get up and down safely.

We're still waiting for them to start work on our new garage, as we special ordered everything to match our house. I'm getting antsy, seeing that beautiful driveway and slab, with no building going on. But it will come, sometime soon. I just need to be patient.

Our older DD and SIL have moved into Daddy's house, in the midst of quite a mess. I'm glad it's them and not us!! But youth puts up with stuff that age can't or won't. We're working as hard as we can to empty the house of all of my parent's things, but it's a slow go.

So, I continue to stay busy, improving little by little each day. Crossing things off my list reduces my stress level, so I rejoice every time I finish one small part of this huge undertaking. Some days I have to hunt for something to feel positive about, but I work hard at staying optimistic. Thanks to all of you dear friends for your encouragement!!!!

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Friday, June 08, 2007

I Should Hang My Head in Shame LOL!

I'm sorry. I've really been missing in action lately in the Blogosphere, but I just don't seem to be able to get everything done in a day that I want to accomplish. And, as much as I enjoy blogging, it is not a top priority.

OK, apology aside, here's a brief recap of what's kept me so busy. First of all, we're still fully involved in settling Daddy's estate. Thank goodness we have a lawyer in the family!! We received the Letters Testamentary the other day, so I've had Daddy's car worked on. It's ready to try to sell now. I'm not looking forward to that, but hopefully it won't take long to find a buyer for the price we want for it. We're meeting with our DD and SIL and the mortgage person at the house tomorrow to fill out the sales contract on the house. There's been a good bit of talking back and forth to get all the particulars of the mortgage worked out to our satisfaction, but it looks like they will close within the next two weeks.

We've also been busy having a driveway and patio put in and the foundation for our new garage. We're waiting now for the special order materials we have chosen that will match our house. We were very pleased to find the same siding and shingles we already have are still available. Once we have the garage, we will be bringing the stuff out of Daddy's house that our daughters do not want, and then we'll be having a huge yard sale!! It may be fun to go to them, but it won't be fun to have one!

We have continued to go to the track, and I'm continuing to get stronger. I feel really great in the mornings, and it's hard to make myself quit, when I feel like I can do more. But, by the afternoon, I'm dragging, and by night time, I am worn out and sore. You'd think I'd sleep well with all this activity, but I'm getting about 4 hours a night. I just don't seem to be able to stay asleep long at all. And the sleeping pills don't help, either.

I've been extremely busy with our online business, too, trying to get our listings on eBay back up to our normal number. We have kept on buying, for the fun of it, even though we were not listing much. So now, it's list or not be able to move around our own home!!

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Monday, May 28, 2007

Decided Against It

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

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

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

Just to document where I stand physically:

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

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

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

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

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Sunday, May 20, 2007

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!!

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Wednesday, May 16, 2007

No Surgery for Me!!

I went back to the Orthopedist yesterday to find out the results of the MRI on my knee. He says I have arthritis, and not a torn cartilage. There are two kinds of cartilage in the knee, and it's the one that is smoothed over the bone that is becoming thin in my knee. That's whats' causing the pain, as bone scrapes against bone. He said I could come back when I needed another Cortisone shot, and eventually, when I can't stand it any more, he can do arthroscopic surgery to smooth it all back out and decrease the pain.

That was what I was hoping he would say, so we're very relieved. Now I won't be quite so timid with my exercising. I plan on making an appointment with the St. Vincent's Sports Facility for next week, and will more than likely join. I'm not having any success getting my DH to agree to join, though. He'll have to drive me and wait on me, just the way he was doing the physical therapy, so it would be great if he would join. Then he could do his own exercising while I do mine. It's tempting to nag ... but I've been around long enough to know that that will backfire. So, I'll go for me, and maybe he'll change his mind.

I was awfully sore from the waist down yesterday. I can't really tell when I'm overdoing it. I don't feel like I'm doing too much at the time, but my body sure does complain that night. LOL My walking really has improved a lot, though, and I'm still doing the exercises that the PT gave me.

So I'm feeling good about my ability to gradually improve, as long as I don't overdo it.

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Wednesday, May 09, 2007

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.

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Tuesday, May 08, 2007

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.

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Sunday, May 06, 2007

Wonderful Weekend!

We used our Date Day Friday to work our way up toward Huntsville, where our younger DD's family lives. We haven't been to see them at their home since last Summer, thanks to all that's been going on with me and with my Daddy. So, we had a wonderful time getting to visit. We even got to watch our twin granddaughters play in their Softball game.

My knee behaved itself, although I was careful to use the cane up and down her steps and at the ball park. When we got home, I have a message to schedule the MRI, as insurance has already approved it. Our older DD has a couple of job interviews lined up, the Will stuff is moving along nicely, and our eBay sales have picked up, now that I'm listing new items almost every day.

We even had rain today, which was so badly needed around here.

Speaking of weather, however, reminds me to say a prayer for all those poor people who have lost everything - even their town - in the Midwest, from tornado damage. May God's hand be felt close to them. He's always there, but sometimes we just don't realize it. I pray that they will feel His strength and comfort in this horrible time they are all going through.

I'm sorry I've not been able to get back to reading everyone's blogs yet. It just seems like my list of things to do gets longer, instead of shorter! LOL And I do appreciate you checking on me, particularly since I'm not reciprocating.

I'll be calling my insurance company tomorrow to find out where I stand on the number of PT visits I'm allowed, but I do have a PT appointment for tomorrow, anyway.

I'm looking forward to a great week, and I hope you have one, too!

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Friday, May 04, 2007

Wonderful Cortisone

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

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

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

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

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

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Thursday, April 26, 2007

The Day After PT - and I'm OK

I'm thankful to be able to say that today I have not been all stove up the way I was last week. The Physical Therapist cut back on the severity and number of repetitions this week, so I'm only mildly sore today. I did make a point of asking her if she thought I should be asking the doctor for a blue parking sticker, and she agreed that I should. I won't need it all the time, but for some places, like the Galleria, which is a huge multi-story mall, I'll definitely be taking the walker, and I'll need to be near the door.

We ate at an old Krystal's yesterday, and I guess that's the first time we've been in one in over 20 years! Luckily, I was having a good day, because the bathroom doors were not much over 20 inches wide! The sink was not much bigger than the size of a sheet of paper! It really looked like what I would imagine an airplane bathroom might look like, and definitely reminds me of the bathrooms on trains as I remember them from my childhood. So, when we got home, I found the Krystal website and complained. I had an answer from the Birmingham District Supervisor by this afternoon. It was pretty much a form letter, but it did have his phone number, etc., so I figured I'd call in a month or so and see if anything is going to be done to make those bathrooms handicap accessible.

We've been consciously advocating for better handicap facilities in businesses we go to for years now, never thinking that someday one of us would be needing them. Now, I'm super conscious, and very glad that I've been doing my part to make managers aware of what needed to be done.

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Tuesday, April 24, 2007

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.

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Friday, April 20, 2007

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.

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Monday, April 16, 2007

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.

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Tuesday, April 10, 2007

Blazing Around the Track!

We've been walking pretty regularly around the park track for several weeks now, with a few days off due to the raw cold, and I've seen a good bit of improvement. I started out using the walker, and was really depending on it. We were lucky enough some time ago to find a good buy at an Estate Sale for the kind that has four large wheels and a padded seat. It's really a Cadillac, as it has all kinds of pockets and sections, plus a large storage bin under the seat. The only drawback is that it takes up a good bit of room in the car, even folded up. But it's been perfect for the track. I don't have to worry about getting stranded on the far side, as I can stop and sit any time I need to. Actually, I haven't sat down yet, but knowing I could makes me push myself further than I would otherwise.

When we started, I was doing good to get around twice, with the walker. Now I'm making two rounds without the walker and two more with it, for a whole mile. Of course, I'm slow, but I definitely see progress! DH is walking with me, and he's up to 6 laps in the time it takes me to do 4.

I haven't heard from the Physical Therapy place yet, so I'll have to call the Orthopedist's office to get the ball rolling on that.

I spent a very upsetting hour or so trying to talk to Medicare about the charges they denied when Daddy went to the hospital. It's standard procedure for Medicare to deny any and all claims if the date of service overlaps the date of Hospice service. Each one has to be reapplied for, with a statement of Denial from the Hospice, proving the charge was unrelated to what he was on Hospice for. So the Medicare person was no help at all. I did, however, get somewhere with the Billing Clerk from the Radiologist who didn't get paid.

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