Praise GOD from Whom All BLESSINGS Flow!!!

I really am doing great, and it's wonderful to be able to say that. Some days I don't have any abnormal movements at all, and on others I have only tolerable ones. I have been on cloud nine now for a couple of weeks, and it looks like I'm here to stay.

I have noticed that as I become more active and expend more muscle effort that the medicine wears off sooner in the evenings. The Movement Disorder doctor said to call him back in two weeks, and he would discuss raising the daytime dose maybe a half pill at that time. Sounds good to me. He just doesn't want me to zombie out on the Primidone, and I don't want that, either. He mentioned physical therapy to help with the slow walking, but that just does not seem necessary to me. I know how to be safe, and as I feel better I am naturally increasing my physical activity. I'm so used to listening to what my body is telling me that I can judge pretty well when it's time to quit.

My house certainly appreciates the extra attention I have been able to give it lately! There's plenty more to do, though. I have about two years of clutter to wade through. When you feel as bad as I have and as unsteady as I have it's just easier and safer to ignore a lot. Hubby has kept us in good meals and clean clothes, but the "stuff" has piled up.

We celebrated our 44th Wedding Anniversary yesterday. I wrote a long post about it on our Yesterday's Memories blog, so I won't repeat that here. The fantastic thing is that even though I was exhausted at night from all we did during the day the last two days, I feel fine today. My muscles are definitely adjusting to more activity.

So I leave this post with a positive outlook and a heart full of thanksgiving!! Whooopppieeeeeeeeee!!!

No Mouth Twitch So Far Today

I moved the Primidone dose last night to eight instead of seven, in an effort to maximize the amount I would have in my bloodstream during the day. It pretty much wore off by about 6:00 last night, so that's not bad at all.

I plan to take it tonight at 9:00PM. I took the morning dose at 7:00AM and have not had any mouth twitching so far. My gait is slow but steady, my hand and foot are not shaking, and my shoulder is not jerking.

I have emailed two members of PatientsLikeMe who are also on Primidone to get their experience with it, but I have not had time this morning to do any other research about this medicine.

I've been busy with our Lost Toy Search Service and our own toy catalog, and I am trying hard to make myself get off the computer in the evenings. I've been watching TV and using the computer at the same time for so long it seems strange to just watch the show. I am finding the long strings of commercials particularly irritating, though, as that's when I normally get something done on the computer. LOL!

I cannot express how wonderful the last few days have been, and I am so thankful to God for providing doctors and researchers with the skills and experience to find something that is helping me.

I filled out a new PDRS, which allows me to rank my current condition on a list of various Parkinson's symptoms. Up until this newest score, I was ranging around 25. The highest score of 32 was in January of 2006, when I was finally diagnosed with Parkinson's Disease, and when I could barely walk at all, even with a walker. My score now is SEVEN!!! I'm sure I ranked some of the answers on the optimistic side when I scored it, but I am feeling so great ... who cares!!!

Primidone is HELPING!!

I've been trying to get to this post for several days now, and other things just kept getting in the way. Also, it looks like I have good news, and I didn't want to celebrate too soon.

I finally got in touch with Dr. Watts' UAB Neurology team, and he sent in a prescription for Primidone on Friday a week ago. I took my first dose Friday night, and was pretty well looped all day Saturday, and almost as drugged feeling all day Sunday. But I was NOT jerking, and my hand was still! My walking was very odd, like I was on a boat or a dock. When I stood still I kind of wobbled, instead of shaking, as if it were slowing the speed of the movements down and increasing the amplitude, if that makes any sense. That lasted for several days, but then by about Wednesday I was only noticing the good effects. As long as the dose was in me, I did not shake, wobble, or tremor at all. Ignoring the slow walking, I was back to NORMAL! Even my handwriting improved. I was not depressed, but trying not to celebrate too soon, because the next step was to add a morning dose, and I wasn't sure what was going to happen then.

I started taking a second dose in the morning as well on Monday. I do get a little woozy feeling for just a little while about an hour or two after I take it, but other than that, it seems to be helping a lot. I have a slight mouth twitch today, the third day I have had two doses, which I did not have Monday or Tuesday. But that is the only symptom other than the slow walking that I have! I do have to be more careful with steps - it's like I can't tell where my feet are.

I am not depressed at all with the Primidone, the way I was with the Clonazepam, and I am very hopeful that this medicine will work for me. I am still doing research on this medicine, but its brand name is Mysoline, and its primary use is in controlling seizures. They assured me that there were no signs of seizures from my tests, so this is what they call an off label use of the drug.

This medicine has a very long half life, and that means there is still plenty of the drug in my system when it is time to take the next dose. Actually, when I was taking just the one pill, I took it at 7:00PM and it did not completely wear off until four or five o'clock the next afternoon. I am also on the lowest dose, so there is room to go if I get used to the medicine and need to up the dosage.

Did you see me doing the happy dance????

I am so thankful to God for his tender mercies!!!!!!!!!!

3T MRI Today

I had the high powered MRI today. Up until a few years ago it was only used in research facilities, but now it is being used for clinical diagnoses. It uses a much stronger magnet than a regular MRI, which means it gets a much finer image of the brain. That's the good part.

The bad part is that it is horribly loud. Even with the headset on to muffle it, I found the high pitched sounds at the beginning and somewhere near the middle to be excruciating. I took a whole Clonazepam pill before having it done, hoping it would diminish my tics somewhat, so they could get clear pictures. They also put extra padding on each side of the helmet like halo to further stabilize my head. They had a good cushion to put under my knees, so I did not have to try to keep my legs bent to deal with the back problems. That was a blessing.

We had to walk through about 4 blocks of hospital buildings (all the buildings have crosswalks over the streets)to get to the MRI section, because the Parking Deck we were supposed to use was Full. There was no way I was going to be able to walk back after the test, as I was way too wobbly, so we waited for transport to take me in a wheelchair.

We have two weeks now to wait for our next appointment with Dr. Watt's team to find out the results of all the tests. so, I'd appreciate it if you would keep us in your thoughts and prayers. There's still a part of me that cannot let go of the thought that all that has been going on with me for the last two years is psychosomatic. I may not be crazy, but I can't shake the thought that this is all my fault - that I have brought all these symptoms on myself as a stress reaction to the last ten years plus of difficult care giving. I desperately need to KNOW what is going on. I need strength to survive the wait.

Two Ruptured Cervical Disks - No Wonder I'm Hurting!

I talked with my Orthopedist's PA the other day, and she confirmed what I already knew. The disks are bulging on the two cervical vertebrae that are degenerating, and that's what is causing the pain and stiffness. She doesn't want to make an anesthesiologist appointment to get an epidural there until I have a chance to talk to my Neurologist. I see him Wednesday. I did ask that she talk to my Neuro's nurse, rather than expect me to relay messages. It seems that the ER did not send any information to him about my time in the ER in September, when I had the horrible drug interaction with a steroid shot. So his nurse was completely surprised to hear I had a bad reaction.

So, we'll be going to the hospital to sign the release form to get the records to take to my Neuro.

I continue to be concerned and in prayer for several Parkie buddies on the PatientsLikeMe site, who have been diagnosed with skin cancers. One has Melanoma, and the other has Squamous Cell Cancer. Both were caught early, with every reason to believe they will be just fine. We are all praying for their recovery.

There is another woman on there who's brother also has PD, who had unrelated surgery, and to quote her - "his brain is mush." She said he has already tried to leave the hospital. When I thought I was going to have to have surgery back a few months ago, I learned all kinds of scary things about how difficult it is for PWP to have any kind of anesthesia without serious side effects. Also, it is very difficult to get hospitals to keep the PD meds coming on time. And that can mean the difference between being mobile and thinking normally, and not.

I wore my new "Sunday" shoes today, and I really like them. They help with my balance, they feel good on, and they are unobtrusive. I doubt if anyone has even noticed that I'm not wearing dress shoes. I don't feel the least bit self conscious in them, so if someone has noticed them - I don't care.

I am having one problem, though, that came unexpectedly. Last night I noticed a red itchy place on my wrist where the back of the Timex watch is against my skin. I had noticed that the skin was getting slick and shiny there a couple of weeks ago, so I started taking it off at night to go to sleep. Evidently I didn't heed the warning in time, as I now have a nice round ringworm there. It's been holding too much moisture against my skin, as it is fairly tight. It's a big man size watch, and not particularly comfortable, but I was willing to tolerate it, because it is so helpful. I may end up taking the band off, and just keeping it in my pocket.

I have not been able to do much exercising for the last month, partly because of my neck, but mostly because my DH over did it and his Sciatica is acting up again. I've been so busy working on the requests on our Plush Memories blog that I have been sitting still more than I probably should be. I've not been doing the Tai Chi, either. I know I really need to get back with a scheduled exercise program, the way I was before.

So, some things improve, while other new aggravations begin. Not so different than what happens to everyone, right?

Standing MRI Tomorrow / Praying for Friends

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

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

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

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

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

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

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

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

My Thanksgiving Prayer

This Thanksgiving will be our first without any of our parents with us. It's the first Thanksgiving where our older daughter and her hubby take over the reins of being hosts, passed down from my Grandmother, to Mama, then to me, and now her. It's a reminder that as things change, they really stay the same. It's a reminder of how very important family is. And how important friends are.

It's also a reminder that I am no longer the caregiver, a role I held for much of my married life. But now, I am "the sick one" in the family. Parkinson's Disease does not have any cure in sight yet, but only ways to manage the symptoms, with varying degrees of success and often horrible side effects. It is progressively debilitating, which I'm daily reminded of, as I talk to so many PWP who are so much worse off than I am. I see it in the difference in what I can do now, compared to last Thanksgiving. But, I am so very thankful that I am still able to walk, talk normally, write fairly legibly, use the computer without problems, that my digestive problems are calming down somewhat, that I am sleeping better, and that I am mentally still ME. I pray that I can still say that next year.

You dear cyber friends, who have been a listening ear as I chronicled this journey, you will never know how much you have helped me deal with all that has been going on this last year. You have helped me give voice to my reactions to this disease. I can't thank you all enough.

I pray that you will all have as wonderful a Thanksgiving as I will, surrounded by family, wrapped in love.

Amen

Requesting Your Prayers

One of the Parkies that I have become friends with on the Patients Like Me site has just had a positive diagnosis of skin cancer, and she is to have surgery on the 14th of November for a lesion slightly bigger than a half dollar.

Now another PWP on the Patients Like Me site has posted that she is getting the results this week on a biopsy for a possible skin cancer on her leg. That's 2 out of less than 700 who have reported it from the PLM Parkinson's membership.

The increased risk of developing Melanoma is one of the characteristics of Parkinson's that few people are aware of. I certainly was not.

The one to have surgery goes by the name of knoxgal, and the one to get the biopsy results goes by pokie too. I know they would both appreciate your prayers on their behalf.

Looks like I'll be making an appointment with a Dermatologist to get checked over from head to toe! Great, another doctor!! But I do think it is wise to have it done, under the circumstances, as I am covered with moles, thanks to my parents.

Impressions are Made

I went on a feverish research marathon on the internet night before last, and printed out a bunch of pages of different dental appliances for sleep apnea. I also found several pages explaining exactly how to talk to my Blue Cross insurance people in order to have a fighting chance of getting this thing covered by my medical insurance. This sort of appliance does not fall under dental, as it really has nothing at all to do with the teeth. I printed a list of possible side effects, too, just in case I had any problems. Troubles are always easier to cope with for me, if I know I'm not the only one having them.

So, armed with all my paperwork, I went to my own dentist yesterday and had a long talk with him. I really like him, and have been going to him for many years. In fact, he has crowned almost every tooth in my head! LOL That's just as well, too, as this appliance would not work if my teeth were not strong and in good condition. But, I digress. I was pleased with what he told me about how he did this process, but even more pleased when he brought my very own hygienist in to talk to me. It seems that she uses the very appliance that he was recommending! She explained that she could move her mouth around with it on, and that was something I was particularly concerned about.

She also told me about the exercises you have to do each morning when you take it out. If you don't do that, you will pull your bite all out of alignment, not to mention have a lot of jaw pain. That's not a problem, as I have to "exercise" my face muscles every day anyway, as part of my Parkinson's exercises. These are designed to forestall the mask look of PWP. We lose the ability to use the fine muscles that control facial expression, and these exercises are supposed to prevent that. I don't know if they will, but I intend to try, anyway. So, adding in some jaw and mouth exercises will be easy enough.

So, I did it. I had the impressions made and paid out 1,000 big bucks right there on the spot. That's not cheap, by any means, and it certainly means I'd better be right about this one!! If you thought I was stubborn about trying to get used to the CPAP, just wait and see how stubborn I can be with that much of my own money invested in it! LOL I really feel like this is something I need to solve the insomnia and resultant brain fog I deal with every day now.

Of course, I will do everything I can to get reimbursed by my insurance company, but I had already decided I would do it, covered or not. I did call the insurance company yesterday to find out what forms I needed to get this approved, and then my Sleep Disorder doctor's office to ask them to get Dr. A to fill them out. So I've started the ball rolling, anyway. I made sure I got the medical code for this appliance from the dentist's office, too, so I could use that in my argument for coverage, if needed. I would not have known to do any of this if it hadn't been for a dentist somewhere in California, of all places, who had a whole page explaining exactly what to do to get this appliance covered. Ain't the internet great?

While I'm waiting the three weeks it will take to get this in, I'll work to get the skin around my mouth back in good shape. Those masks have really done a number on my Acne Rosacea, with dry irritated patches all along my mouth on both sides down to my chin and across. My skin usually takes awhile to heal, once I get this irritated. I quit wearing makeup years ago, because everything broke me out, and I have to be very careful about any soaps or medicines I use on my face. That alone made me a poor candidate for cpap. Adding in the degenerated disks, which required that I be able to move around in my sleep, and I hope I can make a good case that using this "custom fabricated device" is a "medical necessity," as the insurance company requires. Both of those conditions are documented in my medical records, so I think they have a fight on their hands if they try to deny this claim. I'm loaded for bear, and ready to take them on, but, hopefully, they will agree and I won't need to fight them. I really don't need that extra stress. But, what will be, will be.

Getting rid of the cpap frustration and looking forward to getting the dental appliance has improved my mood considerably, so I remain positive that everything will work out for the best. I do covet your prayers and good thoughts that I will find adjusting to the mouth piece to be an easy transition.

The device I'm getting is called a TAP, which stands for Thornton Adjustable Positioner, and you can read all about it here and here, if you're interested.

Trying a Different C-PAP Mask

This makes the fourth different style of mask I've tried, if you include the nasal pillow they put on me in the Sleep Study that I almost went hysterical over. And, this is the last one they have for me to try. So, it's get used to this one, or I'm just not going to be able to do it. The only other chin strap they had was just not what I had in mind, and I could tell it wouldn't work. And, I would have to have paid for a change on that, unlike the mask itself. I have 30 days to decide if I can tolerate this mask.

I had initially categorically turned down even trying on the full mask, which is what I am trying now. At that time, I was still adjusting to the whole idea of it, and the thought of having nose and mouth covered up was just too claustrophobic sounding to me. Now, as I have gotten used to having this claw on my face, it seemed like it was worth trying, as a last resort. It does solve the mouth breathing problem, without having to wear anything extra. And that's a big plus. It leaks though, as I have no chin, and a pug nose, with nothing for it to hold onto. I did sleep longer last night than most nights, so that's a positive sign in the right direction. When I woke up at 2:30 to go to the bathroom, though, I couldn't get it to stop leaking cold air down my neck. By the time I readjusted it somewhat, I was wide awake. I made myself stay there until almost 3:30, though, figuring it would help me adjust to it, even if I were not asleep.

This whole frustrating experience has really been a test of my patience and commitment to see this thing through. Things have always come pretty easy for me, if I really wanted to learn how to do something. I'm not used to having to work so hard to adjust to something new, so this has been a real challenge. DH says when I get mad at the straps I look like I'm about to have a conniption, flailing at my face and yanking the straps off. ROTFL But it's no laughing matter at the time. I have a new appreciation for students of mine over the years who would get so frustrated when they didn't understand the math I was trying to help them with. A pity that I hadn't had an experience like that then, so I could have been more empathetic.

My Sleep Apnea is only mild, according to the doctor, so it's not like I'm going to die in the night if I don't use the machine. But, he wants me to use it, because he feels it will help with my PD symptoms, particularly the brain fog and fatigue. I would love to get out of this haze and have more energy, so I'm trying, really trying to make this work.

I would appreciate your prayers and good thoughts to help me be comfortable with it, as I continue to pray for this each day.

Bits of This and That

I've been a good girl, and I've tried to use the C-Pap machine every night. I can only say try, because I'm still not using it all night long. I did manage to keep it on for 6 hours on Saturday night, and I thought I had it licked. Then last night I couldn't stand it past 1:30AM.

I'm pretty much used to the nose canula now, but the chin strap contraption is quite another matter. I'm going to call the tech again this morning for another appointment, since I only have another week before I'm stuck with whatever equipment I have after 30 days. I have Acne Rosacea, which normally is not a problem for me, as I quit wearing makeup, except for lipstick, many years ago. The reason I bring that up is that all these straps and bands is irritating my face. I'm starting to get red patches around my mouth where the chin strap is rubbing as I turn in the night. There are several other types of chin straps available, so I'm hoping she can find something else that I can use.

We're in the middle of a cold wave right now, with high temperatures in the 90's! So, DH got up this morning in the mood to go walking. We were out at the track at 5:15AM, and there were already people out there walking. It's really the only time of day that it's safe to be doing it right now. I did 3/4 mile, plus my knee and shoulder exercises, and the Tai Chi, while he did 2 miles. Not bad for the first time we've been there in several weeks. Of course, I've been walking around at home and working a little bit in the yard each morning, so I was not out of shape too badly. Maybe tomorrow I'll walk a mile, but I won't push it if I'm not ready. I learned that lesson really well.

The gas is still just as much a problem as it has been, and I'm supposed to call my Gastro this week to let him know how I'm doing. I'll wait a few more days, just in case DH's explanation is right. He thinks I need to give myself a few days for the colon to adjust after the GoLYTELY, and he's probably right.

I also noticed that the tremor in my hands is becoming more noticeable, and showing up more often. I've not had tremors up until recently. Balance wasn't so good yesterday, either. But I'm not in walking shoes on Sunday morning, and that could be it. I am wearing flats, with as much support as I could find, but I never feel as secure when I wear them. I'm not sure what I could wear that didn't look like athletic shoes, but I'm going to have to find something. Part of the problem right now is that I have more tissue swelling than I have been having. I've been on a diuretic for a long time, even before I was diagnosed with PD. But now, my fingers are so swollen that I can't completely close my fists. My ankles are badly swollen, too, and my weight is up, which I'm assuming is fluid.

So, I'm still dealing with lots of little problems, none of which, hopefully, are serious, but all are things that lesson my quality of life. I am thankful that I am in as good a shape as I am. Reading about all the problems that other PWP have makes me feel very blessed that I have a wonderful hubby to help me when I need it, and sympathize with me when I need that, too. I feel for those Parkies friends whose symptoms are so much more debilitating than mine are, and pray that they have a good day today.

Startle Reflex Does Me IN!!

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

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

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

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

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

Losing It

We closed on the house last Thursday, so now one daughter owns Daddy's house, and the other is getting a nice inheritance. It was a very nerve racking event, because the mortgage lady has from day one done a very sloppy job. She has waited until the last minute to tell us about all kinds of things we had to rush around and get done. She's 7 months pregnant, and our DD is afraid if we complain to her boss she will have problems with the baby. If it weren't for DD being so worried about that, we'd be trying to get some of her commission returned to us, as she had to be the worst business person we've ever had to deal with.

Anyway, we went to the bank today and took care of more of the estate business, and I realized after we got there that I had forgotten to bring the mortgage payment check. In fact, I hadn't even thought about bringing it, and I couldn't remember what I had done with it after we got home late Thursday night. I remember telling my DH where I put it when we got home, but he couldn't remember, either. When we came home from the bank, we spent a very hectic afternoon tearing the house apart, looking for it. I was a complete blank, with no idea what the check even looked like. Have you ever tried looking for something when you didn't even know if it was in an envelope or not?? I cried a lot, prayed a lot, and finally gave up.

I figured if I started cleaning up, I might find it, and I finally did, thanks to God's help. It wasn't in a logical place at all. For some reason I had moved it from where I was just sure I had put it to begin with. This whole episode was very scary, and I've told DH that as far as I'm concerned his Power of Attorney just started. I've always been the one to deal with all business matters, but I can't trust myself any more.

Mama had the Alzheimer's type of Parkinson's, and I'm seeing more and more of it in myself. It's very depressing to watch yourself go blank. I can only hope that it will turn out to be the result of my insomnia, not Senile Parkinson's Disease.

Time I Tried to Catch Up

I've ended up doing the very thing I really didn't want to do, and that's not keep this blog as a daily journal. It's just that so much has been happening lately that I just had to put blogging way down on my priority list.

So.... here goes .........

Since I wrote last, Daddy has been much worse. There was a large bulge in his upper right colon area that no amount of enemas, suppositories, stool softeners, or laxatives seemed to be effecting at all. We are fortunate enough to live in the country, where doctors still treat their patients as individuals. So Friday, a week ago, Daddy's primary care physician came out to the house after work! After feeling around on the area, he really didn't think it was a bowel impaction, but there was no way for him to be sure. He suggested we put Daddy in the hospital for some tests. I spent the weekend deeply upset by that prospect, not knowing what was best for him. Dr. Mc understood that we had no intention of any type of surgery, if they did find anything other than fecal matter. On top of the rest of my misery over making this decision, he would be in the hospital I swore I would never take anyone to ever again.

I finally decided that I would be in worse shape emotionally if I didn't at least give it a try, so I was in the hospital with Daddy for several days this last week. We came home Thursday, after the tests they did showed conclusively that it was not fecal matter. We stopped them from running any more tests, so it was left as a diagnosis of a soft tissue mass. I don't need to know what it is ... only that I can give him pain medicine, because it won't be causing more constipation on a blocked bowel.

We also brought home new pressure sores, because it took lots of complaining to get them to change him and turn him. And, when they did handle him, most of them were not gentle with his skin. Did I say I hate that hospital??

One of the two really caring PCA's gave me four hospital gowns to take home, which is a big help at this point.

Yesterday evening, when DH and I started to turn Daddy to change his Depends, he threw up all over the place. Considering the amount of food and liquid Frances had gotten in him, everything must have been sitting in his stomach all day!! He was obviously in pain, so I called the Hospice nurse, who advised that I not try to give him his night medicines or move him for at least an hour. We cleaned him up the best we could and managed to get towels between his skin and the sheets, etc., that were soaked.

After an hour, we changed everything out to clean, but it was obvious we were really hurting him with every turn. After reporting in to the nurse, she said not to feed him or give him any medicine, but to call again if he didn't go to sleep comfortably on his own.

I called her back at 2:00AM, as things were worse again, and she told me to give him the morphine that absorbs through his mouth. She arrived about an hour later, as we are on the outside reach of this Hospice territory. He was running a temp, and his blood pressure was very high. We managed to get the blood pressure med in him that he had missed at supper time, plus a sublingual tablet for fever. I'm not sure what that was.

She then suggested I try to get some sleep, and she sat up with him for three hours, while I napped!! There's a lot about this hospice I don't like, but she moved them up a few notches in my estimation, in the wee hours of this morning!!!!!

Part of the reason I haven't been blogging is that my right arm and hand have been in considerable pain and swelling since we went to the hospital. Thinking it would be enough, I only took my cane. By the time I had walked all over the place as they took Daddy for tests, I had put too much pressure on my arm, and I paid the price for not remembering to swap to the left hand often. Thank goodness, I had thought to pack my hot pad. So I spent his hospital time doping myself up with as much pain medicine as I dared to, and still staying awake enough to be harassing them to do their job. I just couldn't manage the computer very well at all!! It looks like I'm going to have to learn how to use a mouse left handed ... I'm pitifully uncoordinated as a lefty ... far more so now with the PD.

I'm also fortunate that we had bought a really nice wheel walker with the seat in it some time ago at an Estate Sale. DH was very depressed when we bought it, but it was a blessing when my arm hurt so much.

I can't thank you all enough for your prayers and kind thoughts while all this was going on. I knew you were worried about my sudden disappearance, and appreciate the emails I received. Just know that you have been supporting me, even though you didn't know what was going on.

Strange Things Are Hapnin'

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

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

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

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

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

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

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

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.

Arrangements Are Made

I talked to Frances last night, and she can stay late Friday evening, in case traffic runs us late getting home from the doctor's, and she can stay with Daddy on Tuesday. So I'm all set to keep both of the doctor's appointments. I've been doing a lot of searching on the Internet, and it looks like the Insomnia is just another one of those Parkinson's symptoms that a lot of people get, but most people don't know about. Let's face it. The only thing most people know about Parkinson's is that you shake, right? And I don't even do that! LOL!

My dear sweet hubby went all the way to Birmingham yesterday to grocery shop, just so he could get me some Soy yogurt. I was rationing the little bit we had left from our last stop in town, and he knew it. So now I have enough to have one every day for awhile. They're full of cultures, taste good, and my tummy doesn't complain. That's a good combination for me right now.

God gave me an angel in disguise when I "found" this wonderful man. We met at church, too! He's a gentle soul, who would do anything in the world for me, and I feel the same way about him. We've been deeply in love with each other for 46 years now, as it was surely love at first sight when we met. I can't even write this without getting tears in my eyes, just thinking about him.

God has been so good to us, with two wonderful children, two fine son in laws, and three great grandchildren. I need to spend more of my time being thankful for all the blessings in my life, instead of dwelling on my present discomforts.

I think about all the horror stories on the evening news, with children being beaten to death by their own mothers and put in microwaves, and it makes me realize how very fortunate I am to love and be loved by so many family members. I take so much for granted, and that's a sin that I need to repent of and make a conscious effort to cleanse from my life. Thank you, God, for your very near presence with me today. Amen.

Ahhh To Sleep, Perchance to Dream

Thank goodness for Ambien. I called my Neurologist's nurse yesterday and explained the situation with Daddy. She called in the prescription, and I had a good night's sleep last night, for the first time in a week. Whew!! That felt good.

It will take me a few days to get over being so tired, I expect, but getting a good night's sleep will make a world of difference in what I can accomplish without being totally exhausted. Maybe I can even get back to practicing my Tai Chi in Daddy's living room. After going to all that trouble to learn it again, I sure don't want to forget it. And it's good for my balance and stamina, too.

I've been reading some articles lately that say Pilates is good for PWP (people with Parkinson's), so that may be the next thing I look into. I haven't been able to figure out from what I've read if these were specially modified Pilates classes or not. Of course, it would make a big difference if they were. Speaking of PWP, I've also found that Parkinson's folks call themselves Parkies. Ain't that cute? So I'm a PWP and a Parkie now.

One of the Hospice people tried unsuccessfully several times yesterday afternoon to call us from her cell phone. We live in the middle of nowhere, as far as cell coverage is concerned. "Can you hear me now" just won't work out here. In fact, we had Verizon, and dropped it, because we couldn't get it to work at all LOL. She never did come, and we never did get to talk to her, either.

I'm considering ordering DSL for here, so I don't have to depend on my cell phone while I'm on the computer. Plus, for some reason, the program our church uses for editing our website just won't let me FTP from here on dialup. It works fine at the house on DSL. I'm the church webmaster, and that has to be updated weekly.

As you may be able to tell, I'm in a pretty good mood today. It's been over a week since he fell, and we've developed somewhat of a routine. Now that I know I will be able to sleep, I feel like we can handle whatever comes, between the two of us. We've had plenty of care giving experience, and we have Hospice for support. Our daughters and church family will help where they can, and we have our faith in God to hold us in the good and the bad times. What more could we ask.

Your prayers and kind thoughts are always appreciated, too. The effectual fervent prayer of a righteous man availeth much!

Continuing to Feel Good

I felt better for a Sunday than I have in some time. All the exercise is beginning to pay off, I think. Usually, by the time I've cleaned up after Daddy and fixed his cooked Sunday morning breakfast, I'm already tired. Then the long sit through Sunday School and Church just leaves me drained for the day. That didn't happen yesterday. I had plenty of energy. My body still cramped some in church, but not as bad as usual. I've stopped carrying the cane to church, too, so I'm feeling much more normal. Everyone's still good to ask about me and let me know that they are praying for me, which I really appreciate.

I didn't do so good a job of staying off the computer yesterday, even though I really did mean to. This is going to be a hard habit to change, and the difficulty of it just convinces me that it has reached the compulsive point. I've gone through all my usual daily computer tasks already this morning, and I've taken a set of pictures for an eBay listing already, so at least I'm being a little more efficient.

We're taking Daddy to the Podiatrist today, so that will get me away from the computer for awhile. I'm going to see the Podiatrist, too, this time. I made the appointment several months ago, thinking I would keep it if the diagnosis was Parkinson's and cancel it if it weren't. What with the Peripheral Neuropathy, and some very deformed toenails already, it just seemed like a good idea to touch base with him. Daddy sees him every three months, as he's a diabetic, but I don't expect to see him but maybe once a year, unless he tells me otherwise.

I'm noticing a gradual weight loss, which suits me just fine. I've just about cut out all sweets, and my portion sizes are much smaller than they used to be. I really don't feel like eating very much at one time any more. I've cut out the in between snacks, too, for the most part. And the meal at night is usually very small - sometimes only a banana. I just don't get hungry at night any more. We eat our big meal at lunch now, and my dear sweet hubby, who does the cooking, makes sure it's a very nutritious meal. I'm overweight, anyway, which puts extra strain on my legs and balance, so I hope to continue to lose weight gradually for some time.

Tai Chi & Flu Shot - Taking Care of Myself

I went for my Tai Chi lesson yesterday, and I'm finally beginning to show some real improvement. My balance is a lot better, and I can go for the whole 30 minute session without a break now. We went through the whole form several times, with lots of practice on some of the transitions that I have trouble with. It really doesn't matter what he chooses to work on, as it's all good for me. I really like the Sensei. He seems to have an uncanny ability to gauge just how much to push me and when to back off. I guess that comes from years of teaching. All I know is he's good at what he does.

The lessons are not cheap, because I couldn't find a group class anywhere close enough. But then, my medicine isn't cheap, either. I would recommend Tai Chi to anyone who needs to exercise, but is afraid of anything strenuous, because of health issues. You'll get a good workout, but it will be at a pace that your body can slowly adapt to. Plus, it leaves you in a very relaxed state of mind and body.

I also got my flu shot yesterday, too, at my Neurologist's recommendation. I took two Tylenol when we got in the car afterwards, and I haven't had any problems from it at all.

So, I'm continuing to work toward strengthening my body, taking care of myself, and getting back to as normal a routine as I possibly can. I'm house cleaning more, which is good exercise in itself, walking more, and generally feeling like my old self. I thank God every day for giving me that day of normalcy, and I no longer take anything for granted. I pray that I can continue to stay in this attitude of gratitude.

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.

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.

Telling People I Have Parkinson's

Today in Sunday School I told my friends that I have Parkinson's. There were a few gasps, and a few saying at least now I know what's wrong, but everyone was very supportive and tried to be very positive. We even had a special prayer time for me and for my DH, who has the burden of seeing another care giving task in his future. That part of this disease bothers me more than anything else. We thought we would be thro