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!

Tuesday, December 11, 2007

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.

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Tuesday, August 07, 2007

6 Doctor Visits in 6 Days!!

We have kept the roads hot this week, going from one doctor to another, even seeing two doctors twice. But at least I have a better idea of what's going on with several different problems I have been having. I saw my Gastroenterologist twice, and now he has me scheduled to see the doctor he wants me to use for the surgery I need to correct the problem with my digestive system. I was really upset about having to have surgery at a hospital I don't like, if my own doctor performed it. Now I can quit stewing about that. Dr. B solved that problem by telling me that he coordinates for this surgery with this particular doctor, who uses the hospital I like.

I saw the Sleep Specialist twice, too. The nights at the Sleep Study were not pleasant, as I was very uncomfortable in the bed, and the thing they had in my nose felt horrible. Halfway through the night, I got so upset about how miserable I felt that they changed to a different type of mask, and I got through the rest of the night fairly well. Tonight will be my first night to sleep at home with the C-Pap. Wish me luck!!

The tick bite looked really fierce for a few days and itched something awful, but now that I've been on the antibiotics since Friday, my left knee no longer looks like it's getting worse, and has stopped itching.

The Amitiza has turned out to be a good substitute for the Zelnorm that was taken off the market. I'm very pleased with how much it is helping with the constipation problems.

I've been reading everything I could get my hands on about the surgery I am to have, and I discovered that I cannot have Demerol if I stay on my Zelepar. I talked to the Sleep Specialist Doctor about what I would need to do about the Apnea when I have surgery, and I talked to him about the Demerol interaction I had discovered. He suggested I might want to tell them that I was allergic to Demerol, so it would be marked clearly on my chart and they wouldn't dare give it to me. The combination is extremely dangerous, so I might as well be allergic to it, right???

Now the only thing left to do is to make an appointment with the Orthopedic doctor, so I can get another cortisone shot in my right knee, which has arthritis in it. I don't want to be hobbling around the way I am now, trying to recuperate from major surgery!

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Sunday, March 11, 2007

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.

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