Tag Archives: peripheral neuropathy

Can’t Make Up My Mind

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I’ve been going back and forth since Friday, trying to decide whether or not to join the St. Vincent’s Health facility. We toured it Friday afternoon, and the place is really impressive. But when I found out the price, and now that I’m certain that my DH is not going to join, I’m just not sure what to do. If he had joined, I wouldn’t be feeling guilty about all the time it’s going to take to drive there and back, plus the time I’m there, too.

I can justify the cost, if I choose to go, as just being another expensive medicine. If the doctor were to prescribe something that costs $65 a month, and he really thought it would make a positive impact on my Quality of Life, I’d pay for it, without hesitation. So, even though that is a lot of money, I can’t decide not to join just based on cost.

Being dependent on DH to drive me there, wait on me, and then drive home, is very depressing. I’m sure I would join if I could drive myself there, but that’s just not going to happen. It would mean driving on Highway 280, the most congested road in Alabama.

When I had said I was going to join, DH let it slip that he really wasn’t enjoying going walking in the mornings. He’s a night person, so getting up that early is not what he wants to do. He’s been keeping that to himself, because he wanted me to get the exercise. I feel bad that I’ve been hauling him out of bed all this time, when he really didn’t want to, but it’s just like him to put my interests over his.

So now my dilemma is that I don’t want to put him out again, by going so far from home to exercise. I think if it were just exercise equipment, I wouldn’t have any trouble saying no. But there are Yoga and Pilates classes, plus Aquatic classes for Arthritis folks, a shallow therapy pool, a large jacuzzi, a sauna, and a steam room. Hmmmm…. those sound so soothing on aching muscles.

I can’t count how many times I’ve changed my mind this weekend LOL!! This whole wishy washy episode has really brought home to me how very upset I am that I have to depend on somebody else to help me do things I used to be able to do by myself. I don’t like it one bit!!

Daughter’s Gastric Bypass Horror Story Continues

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Our older DD had Gastric Bypass surgery over 2 years ago now, and her health problems from it continue to show up. All last year she battled with Peripheral Neuropathy so bad that she was almost not able to walk at all. She was in and out of the hospital something like 50 or 60 days last year, while they tried to bring her nutrition level up to a point that her body could recover. She thought she was over all that, even though it meant she had to gain back a lot of the weight she had lost.

During that same time period, she was having constant problems with crumbling teeth and abscesses. Now, the dentist tells her that the real problem is that the jaw bone is deteriorating, so the roots of the teeth are not stable. He is planning on pulling them all and putting her in dentures.

And, now, on top of that news she received this week, her eye exam showed serious problems, which they thought at the time was weak muscles from the Neuropathy. So, she went to an ophthalmologist, who says she has holes in her retina. She now has an appointment with a retina specialist.

To say the least, she is overwhelmed. We spent a long time on the phone last night with her sobbing away, and understandably so. When she decided to have the bypass surgery, we did all kinds of research, and at the time it seemed like the best way to improve her quality of life. Obviously, that was not the case.

I realize there are people out there who are so morbidly obese that they are existing, not living, in their present condition. DD’s health was such that she was in serious danger. But now, it’s hard to think that she (we) made the right decision.
If you know anyone who is considering this surgery, please let them know that there are people who have major regrets about it.

Standing MRI & A New Friend

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I had the standing MRI yesterday, and that was quite a bit different from the lying down kind. First of all, it would be much better for anyone who is claustrophobic, as I was not closed in, and they actually had a big screen TV set up so I could watch it.

As far as my procedure was concerned, it was not very comfortable. The whole point was to take the MRI while I was putting weight on the knee, so I had to stand at about a 60 or 70 degree angle, I would guess, and be very still for about 30 minutes. By the time it was over my knee was really complaining, but it was worth every moment of it, if it gets them a better idea of what’s going on in there. I still don’t expect it to be torn cartilage, but soon I will know. Their brochure showed pictures of regular MRI views vs their stand up kind, with obvious disk problems that didn’t show up when the patient was lying down. I may ask for that kind the next time I have to have one on my neck or back, for just that reason. I’ll see the Orthopedist next week to get the report on it.

I’ve added the beginnings of a section on Radial Neuropathy to my side bar, not because I have that, but because I’ve recently started emailing back and forth to a new friend who has it. She and I live in the same small town, I taught her husband, know her MIL, and we’re even members of the same church. And neither one of us knew each other LOL!! It was the Physical Therapist we’ve been going to, who gave her my blog URL, that got us together. She promises that she’ll be posting here, so hopefully she can make contact with others who have problems more similar to hers. My Neuropathy is most noticeable in my legs, although my hands and arms are involved, too. Hers is severe, but I’ll leave it to her to explain it.

I noticed the nausea from the Requip about 11:00AM again yesterday, but a few crackers stopped it. I’m still getting sleepy at the wrong time, as I nodded off early last night watching TV, and I’ve been up since 4:00AM. Actually, I woke up a little after 3:00, but I made myself stay put, thinking I would go back to sleep. No such luck.

I can’t tell any difference in my gait yet, but it may take a week or so before I would notice anything, anyway. I don’t remember reading anything about how long it takes Requip to take effect, so I’ll have to try to do some research on that.

Oh, remember when I was having so much trouble typing? That has definitely improved. It must have been the stress of dealing with Daddy that was making that worse. Parkinson’s folks don’t handle stress as well as others do. I still make more mistakes than I’d like, but nothing like it was for awhile there.

I’ve done my morning exercises, but we’re still not walking at the track. Hubby’s poison ivy is getting worse, not better, and he’s so stubborn I can’t get him to go to the doctor about it. So he’s just slathering on the anti-itch medicines I already had in the house, and he’s trying to stay cool.

Speaking of cool, my temperature regulator is all off whack. I’ll have hot flashes one minute and be freezing the next. I’m putting my jacket on and pulling it off constantly!! This is a Parkies thing, too, so there’s not much else I can do about it.

I’ll spend the day today writing descriptions and finishing the pictures I took this morning, so I can put some new items on eBay tonight. DH has gone grocery shopping, a regular Wednesday morning routine of his, and a chance for him to stop and chat with his buddies. I guess that pretty well catches me up for the day. I hope you are having a good day, too.

Starting Requip Again – Stopped Physical Therapy

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Yesterday was my last time for Physical Therapy on my knee for now. I called my insurance company, and they only allow 15 PT visits a year, unless THEY approve the extra ones, and I’ve used 7 of them already. So, I figured I’d better leave myself with some, in case I have other problems before the end of the year.

I asked her about using the mini trampoline we have, and also a little stepper and an exercise ball. Her concerns had to do with balance, but other than that, she thought they would be fine. She said the stepper was a particularly good one for a PWP, because of the repetitive alternating motion. Of course she cautioned me to go slow about adding minutes to it, and to rest every other day or every two days. She’s very emphatic about reminding me that the Parkinson’s means I have to rest my muscles more than other people would need to. But she emphasized that I need to be on a regular exercise program the rest of my life.

I did start on the Requip again yesterday. Even though I’ve been doing all this exercise and my legs are definitely stronger, I’m still walking very slowly. It’s called Bradykinesia, and it’s always been my main Parkinson’s symptom. Requip has some pretty uncomfortable side effects, as most of the PD meds do, it seems, so I really tried to do without it. But I just don’t think the Zelepar is enough on its own. Dr. S. told me to use my own judgment on starting it back, so I’ve decided it’s time.

I did get nauseated before lunch yesterday and I had a headache last night. Plus, this morning, I got light headed while I was taking pictures for our eBay listings. I stood still too long, I guess. Anyway, I had to stop and sit down, as I broke out in a cold sweat and could feel myself getting woozy. The worst side effect for Requip, though, is compulsive behavior – if that starts up again I won’t be able to use it, for sure.

The PT worked me pretty hard yesterday, knowing it was my last visit, and I was very uncomfortable last night. I ended up taking 2 Lortab to stop the pain in my legs. At least that meant I got a good night’s sleep! They don’t seem to be as sore today, so that’s good.

I’m having the MRI today at a different place, called a Stand Up MRI. That will be a new experience. It makes me wonder if that was chosen to get a different view of my knee, as there is a regular tunnel MRI place in the same building with my doctor.

I just realized that I forgot to call the Orthopedist’s office yesterday to make the follow up appointment. I’m really having a hard time remembering to do everything that needs to be done nowadays. Hubby tries to help me keep it all straight, and I make lists like crazy. I’ve even started using the task reminders on my Outlook program to try to help. Of course I have to remember to put the reminders in the program LOL!

I got an email from the other PT patient who has Neuropathy last night, and of all things, we live in the same town!!! I’ll be doing some research on her particular type of Neuropathy and adding links to it, if I can find anything specific for her. I wonder if she lives anywhere near the EPA toxic site, the way we do????? She’s in far worse shape than I am, and the doctors don’t know what’s causing her problems, either. And she’s young. I’ve added her to my prayers, and I hope she and I can continue to correspond.

It was a day of changes yesterday, but hopefully they will be good changes. Only time will tell.

Quadriceps Are Giving Me Fits

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Well, I think the Physical Therapist came close to killing me last Thursday LOL. The tops of my thighs, where the quadriceps muscles are, were so sore Friday through Sunday that it was all I could do to get in and out of the car or sit down or get up from even the handicap toilet. I spent the whole time on strong pain pills, and much of it with the hot pad in use.

So, when I went for therapy yesterday I was very quick to let her know that whatever she did Thursday was too much. She cut way back and basically just did a few warm ups and then put me on the ultrasound, electrical stimulation, and moist heat for a long time. She doesn’t want me to walk at the track but every other day for one lap, avoiding the days when I have therapy. She says as weak as the quadriceps are that she’s afraid I will lose my balance or start to fall. Without the quads being strong, she says I’ll damage my knee. She was also surprised that I was able to walk even the quarter mile around the track once, even with the cane. She says I’m compensating in some way for the weak quads, which means I have just completely forgotten how to walk normally. I really try to do it “right,” but I must not be, according to her.

She did say that the other PN patient she has is doing better, and she did give her the URL for this blog. I’m going to be disappointed if she doesn’t write, as it will do me good to talk to someone who has a similar problem.

I was a good girl this morning, and only did one slow lap with the cane, concentrating on the technique for each step. Then I did my home exercises while DH walked his 2 miles. He lapped me 3 times before I could get around once! ROTFL

I go back to the Orthopedist next week, and I’ll decide after I talk to him whether I should try to get an appointment with my Neurologist sooner than scheduled. I suspect he will agree with me on that. He was planning on getting an MRI of my knee once I had the PT, as that’s what my insurance required before they would authorize the MRI. I am so thankful that I had this opportunity to go to Physical Therapy. It’s a shame that insurance companies are so stingy with authorizing it. I can’t get it for chronic conditions, so having Parkinson’s Disease or Peripheral Neuropathy wouldn’t get me permission. But wrenching my knee did!! Strange twisted logic – it’s OK for me to fall because of weak muscles sometime in the future????

The deadline for our BLOG VILLAGE HEALTH Carnival is this Friday, but I haven’t decided yet which post to enter from this blog. Too many to choose from, I guess. If you have a post you could enter, I’d appreciate your participation.

Physical Therapy Continues

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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.

Peripheral Neuropathy Rears Its Ugly Head

Day by Day with a Movement Disorder Posted on by 8

I went to the Physical Therapist this morning for evaluation of my knee and shoulder problems. The news was not good. It seems that I have significant weakness in my right leg and hip muscles, and also in my left hip muscles. My hand strength was markedly less in the right hand than the left, but that didn’t surprise me.

She said it was no wonder I was having trouble with my knee, or with walking, as my muscles were so very weak. She does not want me to walk so far at the track, but to concentrate on walking with full use of my hip muscles. I had already realized that I wasn’t doing that. When I do take a full stride from the hip I feel like I’m drunk, with a wobbly unsteady sensation. I don’t know any other way to describe it, and I look drunk, too. She wants me to use my cane on a regular basis, because she doesn’t want me to reinforce my unnatural gait. I’m to see her two more times this week, plus she’s given me a set of exercises to do here at home.

She thinks the knee is so irritated because the muscles that should be providing support just aren’t doing their job well at all. And she said the same thing about both hips. So, I’m going to be busy trying to build up what I can, before I end up on the floor LOL!!

I also had an ultrasound treatment on my knee and an electrical stimulation treatment on the shoulder and the knee, with moist heat, too. That felt wonderful, and it’s supposed to improve and speed up the healing process.

The PT is a very nice lady, and I felt comfortable with her immediately. It’s just as well, as it sounds like I’m going to be going there for awhile. Of course, insurance has a lot to do with how many sessions they’ll let me have, so I need to learn as much as I can about how to do the exercises at home.

A New Year & Renewed Hope

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Today is the first day of a new year, and I must say, I’m glad to see 2006 over and done with. Not many years in my life have involved as many health related problems as last year did. My DH and I both had surgery, and our older DD spent months recuperating from Peripheral Neuropathy, caused by nutritional problems from previous Gastric Bypass surgery. I stayed with her each of the many times she went to the hospital, and I also stayed with her at her house, helping her with a gastric feeding tube, which did not work properly, and was eventually removed. On top of that, I was diagnosed with Parkinson’s and Peripheral Neuropathy. And then, the day after Thanksgiving, my 101 year old Daddy fell from what must have been a light stroke. He can no longer take care of himself, so DH and I have been taking turns staying with him ever since, with the help of Hospice and a hired part time sitter.

So I have high hopes for this New Year of 2007. I figure it’s time we had a quiet year. We survived last year, through God’s grace, with our sanity more or less intact, but with our faith definitely stronger. What’s that expression that Neiche(sp?) gets quoted on all the time? “That which does not kill us, strengthens us.” I think that’s correct, and I certainly believe it.

I’m still pleased with the combination of Miralax and glycerine suppositories, as my digestion PD symptoms have improved tremendously. Tomorrow is my last day to be on Requip, and then on Wednesday I’m going to start taking Zelepar. This is really the first time I’ve tried a Parkinson’s medicine when my digestive system was settled down before I started taking the new meds. At least the Zelepar will have a decent chance of working, without tearing my stomach up!

So I start the New Year full of hope and expectation that it will be a good year.

I Don’t Want to Jinx It, But ….

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I think I’m better! I didn’t dare write anything yesterday. In fact, I was in a bubble of enthusiasm all day, afraid to say the words out loud, for fear it would burst the bubble, and my legs would feel like two ton weights again, slogging through mud.

I’ve been on the Sinemet since Monday night, and I woke up yesterday walking amazingly better. I wouldn’t call it normal, but for me, it was a vast improvement. I was also aware of being happier than I have been in quite some time, but then who wouldn’t be! I noticed that even my upper body movements were faster, which I really hadn’t realized had slowed down.

I think I spent every spare minute all day long thanking God for this miracle. I really over did the physical work, though, as there were so many things I’ve put off doing, because I just haven’t been up to it. I’d work for awhile, and then rest, and then work awhile longer. My leg muscles are telling on me today, for sure, but I’m proud of what I was able to accomplish yesterday.

We didn’t tell anybody at church last night, and I still used the walker. I don’t want to say anything until we get an actual diagnosis, and that will be on my next appointment. From what I’ve read, Parkinson’s symptoms can fluctuate, so one moment can be better or worse than the next, so for now I don’t want to have to explain.

We have decided that if we don’t find one of those adjustable canes with the extra legs on the bottom at an estate sale tomorrow, we’re going to buy one. At the rate I’m going, I may not need the walker much longer. My balance is still not good, so I’ll use the cane, and we’ll keep the walker in the car, in case this doesn’t last. That’s the plan for now, anyway. The balance thing is probably from the Peripheral Neuropathy, anyway, and I don’t think he can do anything about that, except to monitor it to see if it progresses or improves.

If I Could Dance … I Would!!!

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I went to the Neurologist today, and I feel like I had a very productive visit this time. He is agreeing with the diagnosis of Peripheral Neuropathy, but he thinks something else is going on at the same time, as not all my symptoms seem to fit that diagnosis. First of all, the heavy metals test came back negative, so we don’t have to worry about the EPA site, at least. All the other blood tests came back OK, too. One test is having to be done again, as the lab goofed on that one.

Anyway, he’s given me a prescription for Sinemet to take for three weeks and then see him again to see if it makes a difference in my walking. This is a Parkinson’s medicine, which is what I’ve thought he was thinking all along, since Mama had Parkinson’s. She didn’t have tremors, and I’ve only had some shakiness when I was weakened by the colitis or really tired.

I finally feel like I’m getting somewhere!!! At least in 3 weeks we’ll know if it’s Parkinson’s or something similar, and I really think it is. I’m looking forward to being able to walk better. I know I shouldn’t be getting my hopes up so, but right now I’m almost ecstatic!