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!

Monday, April 21, 2008

Unexpected Aftermath of EEG Test - Still on Clonazapam

I had an EEG back when my own Neuro was trying to decide what was wrong with me, so I knew what to expect. Well, I thought I knew what to expect. My "good" left foot has been extremely painful and difficult to walk on for the last few days. At first I blamed it on all the walking we did at the cemetery in my Sketchers, which I now use as Sunday shoes. But I don't think that was the culprit.

I was on the exam table for about 45 minutes, jerking and shaking the whole time. I can't lay down flat like that without setting off back spasms, so I put my good knee up and had my bare foot pressed against the thin pad of the exam table. I must have been pushing down on my foot a lot harder than I realized, in an effort to bear the discomfort of all the jerking. It is gradually improving, but I noticed yesterday that my thigh is also aching. My foot was hurting so badly that I had not even noticed the leg. So, I've decided that's what is wrong with my foot, rather than my shoes. Those are the only unclunky looking shoes I have been able to wear, so I am glad that they probably did not cause my good leg to give me so much trouble.

You are supposed to go up with the good and down with the bad leg, so it was comical yesterday at church trying to figure out which foot to lead with. One hurt, and the other shook! LOL I decided it was safer to lead with the painful one, rather than the jerky one. At least I was less likely to fall.

Speaking of shaking, the Clonazapam may be helping some, particularly with my mouth, but I am staying in a stupor, sleeping through my morning pill alarm, and just generally fuzzed out. He says it will go away --- I sure hope so. Otherwise, I won't be able to take this med.

I can't see any improvement in my foot or my shoulder jerks, though. I'm waiting now to hear about my MRI appointment. I am going to call them today, since we still have not heard from them.

Patience ... still haven't learned it.

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Wednesday, January 23, 2008

Pinched Nerve in Neck is the Culprit

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

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

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

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

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Monday, January 07, 2008

Physical Therapy Continues

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

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

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

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

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

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

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Thursday, December 13, 2007

Sitting MRI and a Full Night's Sleep

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

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

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

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

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

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Thursday, December 06, 2007

I've Been Busy, Busy, Busy!!!

I've been so busy I hadn't even realized how long it had been since I posted here. This is our busy time of year for selling on eBay, so I've been spending a lot of time taking pictures, writing descriptions, and packing items to ship. Hubby helps a lot with the packing, and he goes to the PO with them, but the photography and anything computer related is up to me.

I also have been very busy on the Plush Memories blog, because so many people have written wanting help finding their child's lost lovey. It feels so good to actually help someone, and I have had some successes lately. But right now, I have something like 70 or so requests that I haven't posted yet. Every time I open my email, there are a few more requests. It's almost like being Santa, getting all the letters. But I'm not magic, and there are only so many hours in the day that I can give to it.

I am still sleeping a good 7 to 8 hours a night now. My alarm watch is waking me up at 5:00AM most mornings now. That's made a huge difference in how much energy I have, and I'm not even dropping off to sleep in the car like I had been. I haven't had the nerve to drive again, though. I have mentioned it to hubby, but he just doesn't answer me. Not so sure he thinks it's a good idea.

The elimination problems have improved slowly, and the Bentyl, prune juice, extra Metamucil, and the Glycolax are working. I bought a couple of books about IBS, and I'm trying to change some more of my eating habits, too. I had already made some huge changes over the last few years, thanks to the GERD. But now, my diet is even more restricted than ever. I eat the forbidden foods from time to time, like pizza, but I do it knowing that I can expect to have consequences. And I give in to the chocolate craving every once in awhile, as it's the best cure for being upset that I have ever found. Yes, I am addicted to chocolate!!

Wearing the Skechers shoes helped last Sunday, and I was not anywhere near as unstable in them as I have been in my regular Sunday shoes. They're not the kind of shoes anyone would normally wear with dress up clothes, but they are unobtrusive.

I'm to have a stand up MRI soon for my neck, as the pain and stiffness have not gone away at all. I'm waiting right now for my insurance to approve the test. The muscle relaxer and anti-inflammatory have not made a dent in my neck situation. The X-rays show the degenerated disks, and my Orthopedist knows about the problem I had with the Celestone. He said I may have to go off the Zelepar long enough to have the epidural in my cervical vertebrae. He said I would need to talk to the Anesthetist and work that out with him. Sounds fine to me!!!! If the epidural doesn't work, the only thing left would be some form of surgery, and that I will avoid as long as possible.

Hubby's sciatic nerve problem has flared up again, so he doesn't feel like going to the track to walk. So I've been getting most of my exercise by working in the yard. The Lasagna Compost is still growing, one pile of wood chips, fertilizer, kitchen scraps, and dirt at a time. It sure is tempting to turn the pile to see if it's working, but I have resisted the urge so far. I work in the yard several days a week for over an hour, so that's good.

So, I think I have more positives going on than negatives, and that means today is a good day!!!!

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