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!

Thursday, May 08, 2008

Misery Loves Doesn't Love Company

I am so counting the days until my appointment next week! The depression level I am feeling is so pervasive that I am not fit to be around right now. Hubby is doing what he can to leave me alone and not trigger another crying spell. Or worse, make me mad. We had an actual verbal fight last week, which is most unusual for us.

I knew when I worked in the basement while he was gone that he would be livid when he found out, but I did it anyway. I just needed to be "normal" for a little while so badly that I didn't care that it would cause a fight. He won't let me go down in the basement, because he is afraid I will fall. We do have a horrible mess down there, that needs cleaning out terribly, and I am much more impatient about it than he is.

I hate depending on someone else to get something done that I should be able to do myself. I hate being sick. I hate shaking. I hate being off balance. I hate being seen in public jerking all over the place. I hate using the cane and looking like each step is going to be my last. I hate looking old. I hate not being able to do any work in the yard long enough to accomplish anything.

But most of all I hate this horrible feeling that they are not going to find anything physically wrong with me, and that I am going to end up on some psychiatrist's couch or on mind altering drugs. This Clonazepam is bad enough. I looked up the side effects, and depression and loss of balance are right there in black and white. I'm taking a med to stop some of the very things it will give me - doesn't make much sense does it. I still have the strong mouth tics when I am the least bit upset, and my face is definitely beginning to contort, with right eyebrow high, left eyelid drooping over the eye, and mouth pulled to the left. It looks like I have had a stroke, and can't control the left side of my face, but it's actually quite the opposite, the muscles on the left pull it that way.

I did finally recuperate from the left leg weakness and pain left over from the EEG test, but my nerves have yet to settle back down from the super loud MRI last week. I'm crying at almost everything right now, and can't stand noise at all. The loud TV commercials are bothering me so badly that hubby has started hitting the mute button when they come on. Last Sunday, for some strange reason, the young fellow who runs our sanctuary sound system had some of "his" kind of religious music piping in the auditorium before church. As far as I know that has never happened before. People were talking louder than usual to be heard over the extra noise. I sat there for a few minutes, and then told hubby we had to leave. I just couldn't take it. So, we were some of the first folks at our favorite Chinese restaurant last Sunday. I went to church that night, and it was fine. But that morning was horrible.

I am not sleeping as well as I was, either. Some nights have been good, but there have been a few of the kind I used to have, where I am up at 3 or 4 in the morning. I am not using the TAP, as I just don't think I can deal with it right now. Somehow I just have to make it through until next Wednesday.

I've completely rearranged one of the bedrooms we keep part of our plush lovies stock in, and I have worked some in the yard, trying to get the area ready to plant grass where I worked on the lasagna compost all winter long. I'm trying very hard to stay busy and focused on something besides me, but it ain't workin'!!

Wow! That was quite a rant, even for me!! But it felt good to put it down on paper and acknowledge it. It's real, and I'm not exaggerating. Hopefully, I will be able to look back on this post soon and be thankful it is all over. I always cling to hope, even in my darkest despairing times. God is good. AMEN!

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Saturday, January 20, 2007

Update on Daddy

We took Daddy to the Orthopedist Tuesday, with help from our paid care giver, Frances. That was money well spent, as he still is extremely difficult to transfer from the wheelchair to the car and back. Also, there was so much paperwork to fill out that they were ready to take him downstairs for X-rays before I was through with it all. Thank goodness Frances was there to take him, as DH had gone to the store while we were at the doctor's.

Daddy fell the day after Thanksgiving, but the severe pain and stiffness in his right arm didn't show up until Jan. 3. We figured it was due to using the walker and from putting so much pressure on his arms when he was getting up and down from chairs.

Well, that probably is the reason the pain started later, but it turns out that he has a small chip of the bone at his elbow! Thank goodness the Orthopedist did not put him in a sling. Instead, he's having us put one of those tennis elbow type braces below his elbow. It's supposed to take the pressure off the tendon that connects to the end of his elbow. I tried it the first day under his long sleeved shirt, but by evening his arm and hand were swollen, and it was all I could do the get to the brace from under his sleeve. I've been putting it on the outside of his shirt ever since, and it seems to work just as well. I didn't even have to adjust it last night, as his arm was not so swollen.

The brace seems to be helping, thank goodness. We go back to see Dr. J in a month to see how he's progressing.

So, the arm is better. I wish I could leave it at that. But that would be only half the story. The stress of trying to get him in and out of the car, plus all the strange goings on with the X-rays, a strange doctor, and a strange place, and his pain on top of all that, have left Daddy confused. He has said several things that made it clear that he no longer thinks he's at home. He's also been talking about those children who are making all the noise and running around. Maybe he's had another small stroke. Maybe his depression is worse. I don't know. I just know that he is altered.

We continue to take one step forward and two back, it seems.

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Tuesday, November 28, 2006

Took Daddy to the Doctor

We did take Daddy to the doctor yesterday afternoon. We borrowed a wheelchair from one of our church friends, and we have a very nice ramp left from when Mama needed it, so that made getting him there less of a hassle. The worst part was the long wait at the doctor's office. We had a 2:00 appointment, but didn't see him until after 3:00, and that's normal. If he weren't so conveniently close to the house, we wouldn't put up with it.

Anyway, he started talking about MRI's and tests on carotids, and I told him that we wouldn't be doing any of that, because we wouldn't be following through with any of the results. That took him aback for a second, and then he stopped and thought about who his patient was, and agreed with me. I told him my concern was if Daddy might be developing pneumonia, which could be dealt with, and could he get us some help from Home Health or Hospice. I told him that the stress and extra work of the last few days had exhausted my Parkinson's meds ability to cope with my symptoms, and that my legs were very wobbly. He agreed that Daddy should qualify for some kind of help, and he would get his office lady on it. He gave Daddy an antibiotic shot and a prescription for more antibiotics, and that was it. He agreed with me that it appeared that he had suffered a small stroke, but was reluctant to start him on Cumadin or any other blood thinner, because of his age (he's 101).

So, it was a long day, and a tiring one, as only waiting in a doctor's office can be tiring, but I think we accomplished what I had hoped we would. This doctor will get him on Hospice if it's possible, and that will be the help we need to keep him in his own home. The one thing Daddy dreads is ending up in the hospital or a nursing home, and it's important to me that I help him have the Quality of Life that he wants, even if it shortens it a little. As long as he has lived, I don't think that's a bad thing. With the extra help, and all the help that my DH is giving, we'll make it through this. We've known it was coming, as it was inevitable, but it's still harder to deal with than we had planned, thanks to the Parkinson's leaving me with so little stamina.

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Monday, November 27, 2006

Life's Unexpected Turns

This has certainly been a strange last couple of days for me. It started with my laptop suddenly getting the dreaded Blue Screen of Death over and over, for no apparent reason, right before Thanksgiving. We had all the family coming for dinner, and that meant moving all the eBay stuff out of the guest bedroom, so the grandkids could spend the night. That meant there was no time to work on the ole 'puter, so I had my first taste of computer withdrawal LOL.

I behaved myself, and only worked on the computer in between housework, as I found out very quickly that I have no stamina at all. I used to be able to move all the stuff quite easily, dust and vacuum, and generally straighten the house with no trouble, but not any more. It seemed like I needed to sit down every few minutes and catch my breath. Thank goodness my dear hubby was doing all he could to straighten up the place, and of course he did all the shopping.

Our family helped out a lot on Thanksgiving, instead of just coming and sitting down to the meal, the way they always have before. Our SIL cooked the turkey, and our daughters took care of the deserts, so DH fixed the vegetables, and I didn't have to do anything. It's just as well, as I woke up with those bad stomach cramps and the bloating again on Thanksgiving Day. I spent most of the day with a hot pad on my tummy, ate almost nothing at lunch, but did enjoy having everybody here. Daddy ate almost nothing, and no amount of prodding would get another bite in him. The kids were particularly good this year, as they stayed quiet all day. I asked DD if she had threatened them within an inch of their lives, but she said she hadn't said a thing to them. So they hadn't made Daddy nervous, as they sometimes do with their playful noise, so it didn't make sense that he wasn't eating.

We had a wonderful time enjoying getting to visit with everybody all at once, particularly since our older daughter and her hubby will be with his parents for Christmas this year. Younger daughter and the girls spent the night and didn't go home until Friday afternoon, so we did get on our other laptop and do some Wishlist shopping for the girls, so I'll have some things to pick from that they really want.

After such a pleasant day and a half, even with my stomach cramping, our whole world turned upside down when I got up to Daddy's to fix his supper Friday evening. I found him in the living room floor, conscious, but unable to get out of the floor. He was not hurt, evidently, and doesn't remember falling, but he'd been on the floor most of the day. Mind you, he has one of those "I've Fallen, and I Can't Get Up" buttons in his shirt pockets, but he wouldn't use it! I've never been able to get him to use it. No matter how many times I explain it to him, he thinks it's going to call an ambulance and take him to the hospital. But I have it set to call us, and then a neighbor, and only call the EMT's as a last resort.

So I called my DH, and he all but ran up there, and got him out of the floor, by the hardest. He was very weak, as he had not eaten since breakfast, and he's diabetic. We got some juice and a banana into him, and soon realized that he must have had a mild stroke, as his speech was slurred.

So, I've been taking care of him now for the last few days. He seems to be getting stronger, and his appetite is improving. His speech is still slurred and I'm being really careful to feed him thick foods like oatmeal, so he won't choke. I'm not sure what we will do today. It would be extremely difficult to take him to the doctor, and I'm not so sure it would accomplish anything if we did.

As for me, I can really tell the stress has put a strain on my Parkinson's meds. My balance is poor, because I'm really tired, and my back is bothering me from trying to help him stand up. Luckily, I've had lots of practice at care giving, and I do know the correct way to do things, body mechanics wise.

Daddy will be 102 in March, so it's going to be very difficult for him to recover from whatever happened Friday. He wants to stay home, and I want to be able to help him do that if it's at all possible. If I could be fairly certain that taking him to the doctor would get us some Hospice help, then it would be worth the trouble of getting him in and out of the car and the doctor's office.

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