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!

Saturday, June 28, 2008

Half Pill More of Primidone is Working Just Fine

I hesitated to start taking more of the Primidone for the very first time on our Date Day, just in case it left me loopy, but I decided to take a chance. It was just this sort of extra exercise that made the Primidone wear off faster in the afternoon. I had no problem with it at all. Our very first Estate Sale involved a long walk up a steep driveway to get to the house, and yet I was still steady yesterday evening. So that appears to be the correct dose for me right now. As I gradually increase my activity level, I may have to adjust it again. but for now - it's great!!

I'm still bubbling over such great news and wonderful relief from the jerks, shakes, and twitches. Hubby has been teasing me about how much I'm talking now. He drawls, "It sure was quiet around here," and sounds just like my Daddy - always finding some way to say something negative. He is teasing, and we both laugh every time he says it. It's a shame my Daddy never learned to look on the bright side of things, but I learned my lesson well from him and don't want to ever be that way.

And now I really do have something positive to shout from the rooftops!!! God has blessed me with a wonderful new lease on life, and I can't give Him praises enough!

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Friday, February 22, 2008

Twitching Along ....

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. ;)

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Friday, February 01, 2008

Week One of my Experiment

OK folks, I've been off of all my Parkinson's meds for exactly a week now. I am definitely having more facial tics, but not enough to be the sole reason that I would go back on the meds. Walking is perhaps a little slower and more labored, but nothing like it was back when I was originally diagnosed. So, it remains to be seen just how much this changes this next week. My hand and legs tremors are more pronounced, but again not to a point that I feel compelled to go back on the meds.

And why, you may ask, am I doing this to myself? I am a scientist by nature, with a lifetime of dealing with challenges by using the scientific method. That means isolating the cause and effect relationship by changing only one thing at a time, and using a control as a comparison point. Obviously I can't do this experiment with all the steps in place, but I can try.

It would be so much easier if I had some way to accurately quantify the amount of Bradykinesia (slow movement), tics (involuntary facial muscle twitches), and tremors I have, with their locations, but this is all, by its very nature, subjective.

I'll continue with my experiment on me for a while longer, but I will try to live each day to the fullest, too, and not make this diagnosis all I am about.

So today we went on our Date Day as usual, and I had a wonderful time with my hubby. We just enjoy being in each other's company. I know we are in the house together for days at a time, but he's doing his thing and I'm doing mine. On Fridays, we spend the day together - really together.

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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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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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Sunday, September 30, 2007

Walking on Jello

The saga of drug interactions continues, evidently. I had a Celestone shot on Thursday to get the poison ivy under control, as a steroid shot always does the trick for me. My regular doctor has given these to me several times in the last few years, so I was not surprised when I woke up very nervous Friday. That's pretty much par for the course, plus they make it hard for me to sleep, too. So, I tolerated the shakiness Friday, and we continued with our Estate Sale hunting and went to see our younger DD for an overnight stay.

By Saturday morning I was even shakier, but we had a long way to drive home. I kept the way I was feeling to myself, figuring it would go away, and I did feel better after we ate a big breakfast. But, this morning, I was in really bad shape. I was shaking all over and holding on to furniture and the walls to get around. When my hubby got up several hours after me, I was worse. So, I called the Neurologist's answering service and the doctor on call promptly called me back. After listening to all this, he told me to go to the ER. He said he was concerned it was an infection (I didn't think so, but?) and they would be able to give me something to stop the tremors. So, we were off for the hour long drive to get to the ER, with DH trying his best not to show just how worried he was about me, and me trying my best to be still.

They took me right away, but it still took quite awhile to get the results from all the blood work they did. They did not find signs of any infection, and concluded, just as I had, that the steroid shot had precipitated this acceleration of my symptoms. So, armed with four prescriptions and orders to see my Neurologist this week, they sent me home.

So, at least for now, I'm back on Sinemet, which is the "Gold Standard" drug for Parkinson's. Since I was so nauseated with it when I took it for the Sinemet Challenge that confirmed my Parkinson's diagnosis, I had asked the ER doctor to also give me a prescription for Lodosyn, Carafate, and Phenergan. This is where my journal of everything that has happened since my diagnosis came in handy. I was able to show him in my journal that this is what my own Neurologist had put me on way back in September of 2006, when I got so nauseated with the Sinemet.

So, I'm typing this with a fairly steady hand, with all these extra meds in my system. I have an appointment tomorrow with my Gastroenterologist to find out what he thinks is going on with my digestive tract, and as soon as I know what is going on in that area, I will make an appointment to see my Neurologist.

This whole experience has been very upsetting to say the least, not only for me, but for DH as well. I hate it that he's having to take care of me the way he's had to. I hate it that I couldn't stop myself from shaking. I hate it that the ER guard came immediately, being so very solicitous, wanting to get me a wheelchair, as I was obviously so feeble looking, wobbly cane and all. I hate being this way. Today I got a glimpse of what the future holds. I hate it.

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Sunday, June 10, 2007

Still NO Sleep

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

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

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

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

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

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

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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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Tuesday, May 01, 2007

Stiffness

I had trouble yesterday and today with a lot of stiffness when I got up, and it took quite a while for it to go away. I mentioned it to the PT yesterday, and she said I'm probably going to have to try to keep my activity level fairly constant, rather than over-exerting and then taking a few days off, the way most people would. It's just a Parkinson's thing, she says, and not, LOL, my age!

I did get in and out of the car a whole lot last Friday on our Date Day, as we had a lot of Estate Sales available to look at. So, I didn't do much of anything Saturday. Big mistake, evidently. Well, lesson learned. I'll know now that I need to try to keep on with at least my exercises the next day after I get overly tired. One thing's for sure, I have no intention of cutting back on our Estate Sale haunts, as that's an important part of my Quality of Life. We really enjoy each other's company, and I don't want to mess that time up at all, until it becomes absolutely impossible to continue. And I'm hoping that day is a long, long way away!

I'm looking forward to my Orthopedist appointment this Thursday, and I'm hoping he will authorize the MRI of my knee, just so I can know if I have any torn cartilage or not. I have no intention of having arthroscopic surgery on it at this stage of the game, but if it is torn, I'll probably want to find out about a knee brace for times when I might need it. Our basement is one big junk yard, and right now DH is having to do all the cleaning and throwing out by himself, as I don't dare twist anything. The brace would make me braver about squatting, turning, etc., and I'd feel better if I were helping him. After all, it's in that big a mess because I haven't felt like cleaning it out for a long, long time now, long before he retired and took over much of the housework.

So, here's to being even more physically active and feeling more useful!

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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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Sunday, April 08, 2007

Getting Back to Normal?

I've gotten a lot done in the last few days. We've had the appraiser out to the house, the taxes are ready to sign and mail, and I'm almost finished with the tax bookwork for our paid caregiver. I finally gave up and went to the Orthopedist about my knee and shoulder, too. The X-rays showed the degenerated cervical disk I already knew about, and arthritis in my knee, which wasn't surprising. Dr. J is guessing that I have a torn miniscus, but it will take an MRI to determine that. From what I've been able to read on the Internet, that seems like a reasonable diagnosis to me, particularly since it was injured when I was shifting Daddy up in the bed.

I'll have to go to Physical Therapy and stay on Extra Strength Tylenol 3 times a day before my insurance will agree to the MRI. That's fine with me, as far as the therapy goes, as I'm sure it will be helpful. The Tylenol doesn't even faze the pain, but I'm following his directions and taking it regularly.

We're still walking at the track early in the mornings, but it's been way too cold the last few days. Alabama is having record cold weather right now. So, we've been doing exercises from videos. DH is REALLY following the tape, and I'm bouncing on one of those little trampolines and doing as much of the arm movements as my shoulder will let me.

I'm still just taking the Zelepar, hoping that the exercise and whatever the doctor does for my knee will be enough. I just don't want to try the Requip, if I can possibly help it.

We had our usual Date Day Friday and enjoyed looking at lots of Estate Sales. We've never been able to be an Early Bird before! It was strange to get there before most of the stuff was gone. And we did manage to pick up a few good buys, I think.

It's been ages now since I've taken pictures and put anything on eBay, but I'm going to try to get back to that this week. We have an almost overwhelming amount of "stuff" we've bought in the last few years, and I haven't been able to work seriously on our online sales for almost 2 years. With so much of the Estate business started now, I'm ready to get back to NORMAL.

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Saturday, January 27, 2007

Hallucinations

Daddy has been hallucinating for the last several days off and on. At times he doesn't realize he is at home, and starts wanting to know when we're going home. Although he is blind, I've noticed him looking around at things with this wide eyed expression on his face. He's obviously seeing things that aren't there. And, he's talking about them, too! Normally, Daddy is a very quiet person, but he's been chatting away about these children playing in the living room and the trucks in the bedroom. No amount of reassuring him that it's not real will convince him of it. Up until yesterday, the hallucinations seemed harmless enough, but were a definite sign that something had made a down turn.

Yesterday morning was the worst I've had yet with Daddy. Thank goodness my DH got to the house just about the time I was going to get him up. I found him lying astraddle of the bed, with legs partway off, having made an unsuccessful attempt to get himself out of bed. His bottom was much too close to the edge of the mattress to have him sit up, so we had to try to maneuver him back in the bed. All the while, he's loudly protesting that the trucks are coming into the bedroom, and he's struggling against us, trying to get up. We finally managed to get him seated at the foot of the mattress with enough spare room to be reasonably safe.

The question was, now that we had him there, how were we going to get him up, when he was exhausted. Thank goodness I've had prior experiences I could fall back on! We ended up taking the arm off the wheelchair and making a difficult sideways transfer of about 12 inches!! He's just a dead weight and doesn't help at all. By the time we got him in the chair, I was already worn out. Thank goodness I had taken my Zelepar earlier, before he got up!!

By the hardest, we managed to get him partially dressed, but there was no way to pull up his pants or change him out of his night Depends into fresh ones. With one more gigantic effort, we managed to lift him up enough to get the wet Depends off and a dry one under him, partially taped up on the sides. That was just going to have to do for then. DH rolled him into the kitchen, with his trousers down at his ankles, and I covered him up the best I could.

His kitchen table is too low to let the arms of the wheelchair go under it, so he tried to eat breakfast farther away from the table than he's used to. He was still hallucinating and talking about the hole in his bedroom wall where the trucks had come through. He ate very little, but he did let me feed him a few bites. Luckily, we have the Rhoho cushion that Mama had after she broke her hip. Sitting on that is like sitting on air, and it's designed to prevent pressure sores. So we stood him up one last time for the day, and managed to get it under him. We ended up leaving him in the wheelchair all day, for safety's sake.

DH stayed longer than usual last night, so he could help me get Daddy to bed. It was not easy, but it was nowhere near as bad as getting him out had been.

Frances came today, and thank goodness Daddy was lucid this morning! Since I knew what to expect today, she and I changed the Depends and got him partially dressed before we ever let him get up. That made things a lot simpler. We stuck around and helped with him until she had him ready for breakfast. Then we got out of there for our Date Day. We both really needed to be away from all that nervous tension for awhile.

He's still really weak tonight, but he's beginning to understand a little of what is expected of him when he needs to make a transfer. That helps a lot.

So I write this tonight, not knowing who I will deal with tomorrow - my Daddy, or the fellow with all the trucks and children. I'll find out in the morning, won't I?

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Saturday, December 30, 2006

My Digestive System Is Behaving! Not So Sure about Us??

It looks like the Gastroenterologist has found the right combination to get my digestive system working again in a manageable way. I haven't had any pain or bloating now for several days, and I've been able to eat some things I wouldn't have dreamed of trying just last week. I still don't have an appetite, but I still need to lose weight, too! So I'll count that as a blessing for right now.

We had our Date Day today, instead of yesterday, because our respite care giver couldn't come yesterday. We had an enjoyable day together, not really doing much, but just relaxing. With my balance as wacky as it is right now, there's not much else we could do.

Daddy, DH, and I had our first big flare up of tempers this evening. It was just a matter of time before it happened. We've been trying to stall it by getting out of the house a couple of days each week, but it was inevitable.

Daddy hates the idea of having anybody in his house, doing things he would normally be doing, or changing his routines. He's been independent too long to take easily to having DH and me here, and certainly to having Frances here two days a week. And he hates not being able to take care of himself any more.

We've understood how he felt, so we've been biting our tongues ever since he fell, as his bitterness shows through in almost everything he says to us. Hopefully this show of temper on all our parts will clear the air for a little while, but that remains to be seen.

So my relaxing day had a somewhat dramatic end, but as thick as the tension has been around here, it may well have been for the best in the long run. I can only hope so.

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Sunday, December 24, 2006

Christmas Eve

I continue on the full regimen that the Gastroenterologist has me on, so far with little success. I did manage to eat a baked sweet potato last night without any pain afterwards, so I consider that an improvement, anyway. They are full of vitamins and fiber, so they make a good small meal for me right now.

We went on our Date Day Friday and bought a few things at the only Estate Sale open in the whole city! By the time we got there they weren't crowded, and much of the stuff had been sold, but we did manage to find a few little things that I think will sell well. Plus, I have a thing for real hankies. I can't stand to use Kleenex tissue! I like a real, soft, cloth handkerchief on my tender nose. So we're always on the lookout at such sales for old hankies, and we found what appear to be some brand new ones. I was glad to get them.

We piddled around a few hours at the nearest Thrift Store and at Walmart, ate a grilled chicken sandwich at Chic Filet, and then we went to see The Nativity Story movie. I thoroughly enjoyed it. The scenery and the detail of all the activities going on in the background are supposed to be very authentic to the time period, so I found that part fascinating. As to the plot, they did a good job of presenting the whole thing in a believable way, clearly portraying the disdain of, and even shunning by, their neighbors of this young couple who had "not waited the alloted time before having sex."

The harsh journey to Bethlehem was dramatic, but maybe a little too long time wise, but certainly worth it for the story line. It was a relaxing few hours that helped to emphasize the true meaning of Christmas. I was very glad we went to see it.

Being able to look forward to these times to "escape" care giving have been a Godsend. It's funny in a way. The lady who stays with Daddy for us lives with her own elderly mother. She's always glad to be able to get away from her for awhile! LOL! And here we are, paying her so we can get away from Daddy for awhile. But Daddy never asks her to do anything. As soon as she's gone, he starts in with his list of things for us to do. It's really funny, as long as we're rested and in good humor.

So, here I am, in the early hours of Christmas Eve morning, writing this post. Frances will be coming this morning, so I will get to go to church today, thank goodness. I need that right now. I've missed my church family lately more than I realized, but we've always been regular attenders, and I've been out so much this year with my own illness, and now Daddy's, that I'm losing my connection to them. God meant for us to assemble ourselves together, and not to worship alone all the time.

So I'm looking forward to seeing my friends in Sunday School and worshiping together in Church today.

May God shower his blessings on each of you through this coming year, and may the Glory of the Christ Child shine all around you. Amen.

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Friday, December 08, 2006

We Went on a Date Today!!

Thanks to being able to hire the same sitter we had used several years ago, when we were taking care of my mother and father in law, we were able to go out on our Date Day today! It was wonderful to get out of the house and know that Daddy would be well taken care of.

I set a fairly light itinerary for the day, since I knew I was so tired, but I did want to at least go to a few Estate Sales. We had very good luck at one of them, since we caught them at that stage when they just wanted to get rid of everything. That doesn't happen very often, but when we're lucky enough to find a real sale like that, we usually leave with some real bargains. Today was no exception. Now all I have to do (HA!) is find the time to photograph everything we bought and write up the descriptions, so we can put them up for sale on eBay.

I managed to take several doses of Tylenol during the day without DH realizing it, as I didn't want him to know that I was so achy. I was determined that our day together not be spoiled. I only used the cane at one house, because the driveway was very steep, but my walking was stiff and awkward feeling all day today. That's a sure sign of just how tired I am.

I had a bad headache today, too, something I rarely have any more. I suspect that's because I'm still not getting enough sleep. I've already had my night medicine and a sleeping pill, as I write this, and I plan to go to sleep as soon as I finish this post. I'm really not having that much trouble going to sleep. It's staying asleep that's giving me trouble. And, of course, my tummy couldn't get through the day without putting up a fuss. I was extra careful to eat bland foods, but here I sit, with the hot pad across my middle, trying to make things feel better.

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Thursday, December 07, 2006

We've Hired a Respite Aide!!

I talked to Daddy yesterday about me needing some rest and a chance to settle my nerves and my stomach, and the fact that I had a doctor's appointment coming up that would require finding someone to stay with him that day. He was agreeable to me trying to get the lady who had stayed at the house when I needed relief with Mama. I was a little surprised he agreed to it so quickly, but very glad he did.

So, I left a message for her to call, and she and I made some arrangements last night. She's going to spend all day on Friday and part of the day on Sunday with Daddy, so DH and I can get completely away from the care giving responsibilities for just a little while. That will be good for us both, but particularly for me, I think. It also means we can go back to going to the yard sales and Estate Sales and having our Date Day again. I've really missed that. And I can go to at least Sunday School, and probably church, too.

Thank goodness Daddy has never been one to spend a lot of money, so we should be able to take care of the respite care costs without a problem. I really feel for those care givers who are not able to pay anyone to give themselves a break every once in awhile. I hope for their sakes that they have family nearby who can spell them. Since we don't have family near, this is our best choice. She's already used to Daddy, and he's already used to her, and we trust her. We couldn't ask for a better combination.

Frances was so excited to hear from us, being the Christmas season, and she was between jobs. She was more than happy to take part time work, under the circumstances. I told her we'd understand if she found full time employment, as long as she kept her obligation for my Dec. 20th appointment. She agreed. So a salary was agreed on, and she will be at Daddy's at 7:00AM this Friday!!

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Saturday, November 18, 2006

Another Great Day!

We had a wonderful Date Day yesterday, with beautiful Fall weather, and some really nice finds at a handful of garage/moving and Estate sales. Because of the direction we headed, DH didn't have to deal with horrible Friday afternoon traffic when it was time to head home, like he usually does, so that made it even better.

We ate out at a buffet, so I was able to find plenty that I could eat, while he could get what he wanted. I've gotten in the habit of taking a couple of Beano caplets before I eat, anytime I even suspect that I'm going to eat something that might produce gas, and that seems to be helping, too. All and all, I seem to be settling into a pretty good idea of how to eat in such a way as to protect my stomach, as things have been pretty calm for several days now.

I wrote to the Ask the Doctor mailing list on the National Parkinson's Foundation site last week, and my post showed up in the email today. It takes about a week between sending in a question and getting an answer, as these are practicing physicians, who take the time to answer the questions. I had asked the mailing list doctor if he could suggest any meds that I could take in patch form, to bypass my stomach.

The doctor suggested I try the form of Selegiline, called Zelepar, that dissolves under the tongue and bypasses the stomach, and also go back to Sinemet, with a larger dose of Lodocyn. According to him, Requip causes more nausea than Sinemet does. My Dr. S. had said he couldn't promise that the Requip wouldn't make me more nauseated, but that he wanted to give it a try.

So, for now, at least, I'll stick to the Requip, but if the nausea and bloating start up again, I think I'll make an appointment with the Neurologist for as soon as possible, and see what he says about the Parkinsons's Foundation Doctor's suggestion.

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Monday, November 06, 2006

Thankful to be Used by God

The last few days have been wonderful, with no problems of any kind. I've been exercising as much as I possibly can and catching up on some housework and eBay work that's been put aside.

I've been glowing from the experience we had while on our Date Day Friday. While following the directions from one estate or yard sale to the next, we had trouble finding one address. We had about decided to just skip it, but DH happened to see a sign in the local grocery store window, advertising the estate sale. I had read the directions wrong. So, we tried again and found the house. There weren't any cars parked around it, and we had to ring the doorbell. An older woman answered the door and invited us in to a house full of stuff in every room. But instead of it being things you would expect to be hers, it all seemed to be the kinds of things a young man would have.

After we looked around a few minutes and oooed and aahed over the beautiful old woodwork on the old home, she began to get talkative. She told us all about her son, who had lived in the house for about a year, before he had a seizure, fell in the front yard late one night while walking his dog, and ended up having five back surgeries that left him a paraplegic.

He had to move in with his parents and sell his home and his possessions, so his Mama was doing the selling. She was obviously upset as she related his story. She related how he was still having difficulty adjusting to this drastic change in his life, which seems pretty reasonable, under the circumstances. Of course, I was using my cane, so when I told her I had been diagnosed with Parkinson's she talked even more about how emotional he had become. I suggested he visit Wheelie Catholic, as Ruth has such inspirational posts and could find people in similar circumstances for him to talk to. She seemed very grateful.

We didn't see anything we wanted to buy, but we stayed there a long time, talking and mostly listening, because she really needed to talk. Both of us felt like God had led us straight to her. Our past experiences as caregivers, my current situation as someone newly diagnosed with a debilitating disease, and the similarity of our ages, all made her comfortable opening up. She cried a little and talked a lot, and we promised to pray for her son.

It was a perfect example of God working all things for good, and it has left me with a very thankful heart that we were able to be of help to this sweet lady, struggling to help her son, and yet feeling so helpless.

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Saturday, October 21, 2006

Am I in Denial?

We had our usual Date Day yesterday, and had a good time, as usual. It was windy and cold, and I was bundled up. DH was in short sleeves, enjoying the brisk fall weather. We've always been at opposite ends of the hot natured, cold natured spectrum, and it looks like the PD is just going to make that worse :).

We found a few good buys, but at one of the estate sales we found one of those deluxe model walkers with the padded seat and all the extra pockets that really looked brand new. The daughter selling everything said her mother had only used it a few months, and that's exactly what it looked like. She didn't want much for it, as I've been pricing them, and I knew it was a good buy. So, even though I don't need it now, we bought it.

As we paid for it, she made some remark about how I was going to enjoy using it, and I replied that I couldn't really say I would enjoy using it, but I knew that I would eventually need it. My DH went on ahead to the car, so he could figure out how to pack it away, and when I caught up with him, he had tears in his eyes. I, on the other hand, was totally unaffected. When I asked him about why he thought it was bothering him so much more than it did me, he answered that maybe he loved me more than I loved myself.

That's a load to think about for sure! It did get me to thinking that maybe all my "busyness" reading about Parkinson's and writing this blog is somehow a way to block out my emotions about it. I don't know. All I do know is that for right now I'm honestly not upset by all this. It's certainly not because I haven't read about how horribly debilitating it can become, because I've read plenty of that. All I know is that I've laid it in God's hands, and I'm trusting Him to make the best of whatever happens. I do pray daily that my DH will find some peace about this whole situation.

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Friday, October 06, 2006

Busy Busy Day

I walked to Daddy's this morning .... the first time I've done that in about six months or so. He lives about a block or two away, I guess, but we don't have blocks. DH came and got me, so I wouldn't tire out too much.

We had a full day today, making our usual round of the Estate Sales, looking for the really good bargains. We did find a few goodies, too, and I got a lot of walking in. By lunch time I was pretty well worn out, but it was fun. After lunch we went to the thrift store and did some more bargain hunting and then headed to the other side of town for my Gastroenterologist appointment.

Dr. B doesn't seem to think that the acid reflux I'm experiencing is due to the Parkinson's medicines, so he's scheduled an endoscopy and an ultrasound for next week, and I gave more blood today for a liver function test.

As caregivers, we always kept a spiral notebook log of everything that happened concerning our loved one, such as when we gave medicine, any behavior changes, any digestion problems, etc., and we always took it to the doctors. So today, for the first time, we used the new notebook we bought yesterday for the start of my log, writing down Dr. B's directions for me to take my Protonix twice a day and not drink any liquids with my meals. We'll continue to note anything out of the ordinary in the notebook from now on.

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Sunday, October 01, 2006

Acid Reflux Still, Plus Procrastination????

The last few days have been relatively uneventful, so I haven't been posting. We enjoyed our Date Day, and the cane certainly made things easier to navigate than the walker did. My muscles had a good workout for the day, and I could tell it Saturday, but that's OK. The exercise is good for me, and getting out of the house is even better.

I'm still fighting the acid reflux, though. I can't seem to get it stopped, and my throat is definitely irritated. I've played around with the timing of my meds, eating some crackers when I take the pills, and I think that's going to be the right thing to do. I've also upped my water intake, as that is good for my throat. I've been experimenting with when to eat supper, too, in relation to taking that last Sinemet. Yesterday, I took the third one at 4:30PM and ate supper at 5:30. That seemed to work pretty well, as it gives me time to empty my stomach before I get sleepy at 8:00PM. Sometimes I can manage to stay awake later, but not always. But then I'm wide awake at 4:00 or 5:00AM in the morning. I've always been an early to bed, early to rise sort of person, so this is nothing new.

What is new, that I'm just now coming to terms with, is that I'm procrastinating on paying bills, and I really don't know why. I've been doing it for months now, even letting some credit cards get late charges. DH gets very upset with me, and I have no defense, because he's right. I have plenty of time to get it done, and spend way too much time on the computer. It just seems like every time I think about doing certain things, I talk myself out of it. I'm wondering if this isn't a sign of depression, as this is just not like me at all. Or maybe it's a PD symptom? Or maybe I've just gotten lazy!!

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Friday, September 22, 2006

Starting Now to Work on Future Quality of Life

We had our Date Day today, spending a pleasant day going from one Estate Sale to another. We found what I think will be a few really good purchases, but we won't really know until we put them up for auction and see what they sell for.

We went to one sale that was right around the corner from the house I grew up in. It felt really odd being back in such a familiar neighborhood, but I'm glad we went. I told the fellow who was having the sale that I trick or treated at that house all through my childhood. We did buy a few things there, too. And we swung by my old home, just to see how it looked. My old street still looks pretty much as it did when I was a child, which is truly amazing, because this area of town has become run down over the years.

We had decided if we could not find an adjustable cane at a sale today, since we've been looking for one for several weeks, we would buy a new one on the way home. So now I have a cane, too! I searched the Internet and found Exercises for the Parkinson's Patient. Until I find out otherwise, I'm assuming my improvement means I do have Parkinson's, and I'm starting now to think about what I eat and what I can do physically to improve my quality of life for as long as possible.

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Friday, September 15, 2006

Wonderful Date Day Today!

DH and I had a wonderful time today traveling all over the backwoods, through some of the small mining towns north of Birmingham, going to several Estate Sales and a few Yard Sales, too. We got lost a few times, but we still had a lot of fun, and I think we made some good buys. We finally ended up getting lost in the general vicinity of one of our favorite Thrift Stores, so we decided to quit going around in circles and went to the store, instead. We had very good luck there, as we usually do. One item will cover a large part of our day's expenses, so the rest of our day's purchases will be all profit when they sell.

I really do need to find one of those adjustable canes with the prongs on the end. When you go to sales like this the houses tend to be crowded with stuff and people, and sometimes the walker is really in the way. I'm glad I have it, though, as I wouldn't be able to enjoy so much walking without it.

So far people have been very kind and helpful. I haven't yet hit anyone being rude, but at least I'm prepared for it, thanks to several posts and comments on Wheelie Catholic. Of course people in the South generally are more polite than other parts of the country, so I may not run into one of the rude jerks that others have discussed. I hope not, because I'm not sure how DH would handle it.

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Friday, September 01, 2006

Friday Date Day Plus Walker - 1st Time

DH and I had a fairly normal Date Day today. The only thing that kept it from being completely normal was that nobody was having any Estate Sales today within a decent driving distance of our house.

I've worked out a pretty good system. I use the online version of our newspaper to find the Garage Sales section, and I search for the Friday sales and the Estate sales. With that tab of FireFox open, I go to our AAA membership and pull up the travel map tab. All I have to do is copy and paste the addresses of the sales into the AAA page, and their program will turn it into a trip map. Once I get a look at the map, I can tell how to rearrange the stops to make it the most efficient gas wise. With a printout of the directions and maps to go by, it takes all the stress out of finding the sales.

We try to pick a different part of town each week, and we know where the good thrift stores are, too, so we'll always find something we can sell for a profit, that will pay for our mileage and dinner out, at least. We've been doing this long enough that we pretty well know which parts of town are likely to have steep driveways, so we avoid those for now.

We've been selling vintage collectibles and plush animals and soft dolls on eBay and from our own website now for several years, and it's been a lot of fun. (In case you're curious about what we have available right now, you'll find our shop banners in the right hand column.) I haven't put any new items up for sale for several months now, as I've been so sick, but I'm hoping to get busy this next week.

I'm very glad to find that having trouble walking isn't going to spoil our Date Day fun. Using the walker worked quite well today. My biggest problem seems to be when I stop and stand still for awhile. If my leg condition turns out to be a permanent situation (I'm still being evaluated) then I'm definitely going to want one of those that has the built in seat. From what I can tell from looking on the Internet, I think I want push brakes, too. If any reader has any experience with different types of walkers, I'd appreciate your suggestions.

My DH fussed at me for apologizing to him for his having to get the walker in and out of the car so many times for the different yard sales. I can't help it, though. It makes me feel bad that I'm having to inconvenience him. I know he loves me and would do what ever I need for him to do, just as I would do for him. I know that. Yes, I do know that. Saying it just doesn't seem to help the way I feel, though....... Something else to get used to.

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