Tag Archives: walker

My Last Clonazepam

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Well, I “slept” without the Clonazepam last night. It wasn’t good sleep, by any means, as I have no idea how many times I woke up and waited to go back to sleep for a bit – but I made it through.

Of course, because of the long half-life of this benzo, I still have some of that last .25mg pill from Thursday night in my system. It will take the rest of the weekend before I dare try going back to my old meds – Methacarbamol and Neurontin. I have called for a Neuro appointment, but no telling how long it will be before I can actually see him.

Maybe this couple of months off my usual meds will make them work better for me again. I had been gradually increasing the doses to the maximum, because they were no longer helping with the muscle spasms and pain. And the high doses were making the brain fog worse. That’s why I had asked for a med change, and how I came to be back trying Clonazepam.

I decided to look back through all my blog posts for every mention of Clonazepam, as I had been on it once before, back near the beginning of this saga. At that time I was on Parkinson’s meds, and the extreme muscle weakness I experienced was attributed to the combination of meds. Now I know that’s probably not the case. The wet noodle muscle weakness I described back then is exactly how I’m feeling now.

Asking for Help Doesn’t Come Easy

DH has done his best to take up the slack here at home, helping with things I would normally do quite easily. I had gotten very frustrated with him, because he wasn’t helping. But he’s not a mind reader, and I hadn’t actually asked him for help. So we had a “come to meetin’ talk” the other night. Now the air has been cleared, and I’m getting more help. I still have to remind him, as he had gotten in the habit of letting me do a lot of stuff he once would have done automatically. His paralyzed leg and slow recovery from his heart attack changed both our roles considerably. But for now, I’m more in need of help than he is. And I’m getting it, sometimes after asking, sometimes without asking.

I did ask DH to bring the walker back upstairs, but I’m resisting using it, just as I did years ago. My DD fussed at me yesterday when she saw how slow and shuffling my gait has gotten, saying I needed to get over my pride and go back to using it. I know she’s right, but it’s a hard change to make. It feels like defeat. And in my mind it’s so much more VISIBLE than my gait – it makes me conspicuous, and that’s something I am NOT comfortable with.

This whole process of slowly going off one set of meds, then slowly going on another med, slowly increasing the dosage, then slowly cutting the dosage back to nothing has taken a couple of months. It’s the only safe way to transition from such powerful chemicals, and it’s the only way to find out if something different will help any more than what I was already on.

So I continue being a clinical trial of one, basically using myself as a guinea pig, praying each time that something will work to improve my quality of life.

Hemochromatosis – Another Possibility Crossed Off the List

Day by Day with a Movement Disorder Posted on by 4

Well, the DNA test for Hemochromatosis came back normal, so that’s another possible diagnosis for my weakness ruled out. But after doing the research on this particular line of testing, I would caution anyone with Anglo Saxon ancestry to consider this as a possible cause of a wide range of disorders, from Type II Diabetes to heart problems.

It’s the most common genetic mutation found so far, with as many as 1 in 8 of Irish descent being a carrier of the gene. Something in the range of 1 in 300 Northern Europeans have at least one of these mutated genes, but it takes the mutation from both parents for the likelihood of symptoms to be dramatic. And if caught before organ damage is done, it can be easily treated. It normally takes many years to build up the iron overload, so most people don’t show symptoms until they are older.

With the Hemochromatosis test being normal, my Gastro doesn’t want to see me again for 6 months. So I guess that means he’s ruled out any liver problems as being the cause of my problems.

So, I’ve requested a Western Blot Lyme Disease blood test. I know this is a very, very long shot, but I have had the bull’s eye rash from a tick bite in the past. We found it one evening and were waiting at the doctor’s office’s doorstep the next morning. He put me on a round of antibiotics at that time. So the chances of having Lyme are not high, at least from that event. BUT, I have always lived in Alabama, and ticks are everywhere. I can’t count how many times I can remember finding them on me over the years, and their bite doesn’t always make the bull’s eye rash.

Lyme Disease can mimic lots of other diseases, depending on which organs the bacteria attacks, including neurological disorders. Treating it involves long term antibiotics, which may or may not reverse the damage already done to the body. So, I’m hoping this test turns out to be negative.

I did get a referral from my GP to an Endocrinologist, and I have an appointment with him in mid August. I’m still holding out hope that this terrible weakness turns out to be from Hypothyroidism, which our daughter has been treated for for many years. My symptoms do fit, even though the routine tests came back normal. But it is possible to have a hypothyroid condition with normal tests. It would explain my muscle weakness, hoarseness, and intense itching, and it’s fairly easy to treat.

I see my Neuro again next week, so we’ll see what he says then.

In the meantime I continue to use the cane outside the house, and could really use the walker. But I’m back to that same head space I was years ago when I was originally dx with Parkinson’s. There’s just something about “giving in” to the walker that I try to put off as long as possible. It’s bad enough having to use the cane, without having people see me as getting worse. It draws too much attention to me, and I can’t stand that.

So for now, I’m praying this turns out to be something simple to treat, like thyroid problems, and not some exotic disease that may never be diagnosed.

I’m trying to be patient, but frankly I’m not doing a very good job of it. I deal with an enemy I know much better than I do the unknown. But I’m in God’s Hands, and He knows my needs far better than I ever could.

The Day After PT – and I’m OK

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I’m thankful to be able to say that today I have not been all stove up the way I was last week. The Physical Therapist cut back on the severity and number of repetitions this week, so I’m only mildly sore today. I did make a point of asking her if she thought I should be asking the doctor for a blue parking sticker, and she agreed that I should. I won’t need it all the time, but for some places, like the Galleria, which is a huge multi-story mall, I’ll definitely be taking the walker, and I’ll need to be near the door.

We ate at an old Krystal’s yesterday, and I guess that’s the first time we’ve been in one in over 20 years! Luckily, I was having a good day, because the bathroom doors were not much over 20 inches wide! The sink was not much bigger than the size of a sheet of paper! It really looked like what I would imagine an airplane bathroom might look like, and definitely reminds me of the bathrooms on trains as I remember them from my childhood. So, when we got home, I found the Krystal website and complained. I had an answer from the Birmingham District Supervisor by this afternoon. It was pretty much a form letter, but it did have his phone number, etc., so I figured I’d call in a month or so and see if anything is going to be done to make those bathrooms handicap accessible.

We’ve been consciously advocating for better handicap facilities in businesses we go to for years now, never thinking that someday one of us would be needing them. Now, I’m super conscious, and very glad that I’ve been doing my part to make managers aware of what needed to be done.

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.

Blazing Around the Track!

Day by Day with a Movement Disorder Posted on by 6

We’ve been walking pretty regularly around the park track for several weeks now, with a few days off due to the raw cold, and I’ve seen a good bit of improvement. I started out using the walker, and was really depending on it. We were lucky enough some time ago to find a good buy at an Estate Sale for the kind that has four large wheels and a padded seat. It’s really a Cadillac, as it has all kinds of pockets and sections, plus a large storage bin under the seat. The only drawback is that it takes up a good bit of room in the car, even folded up. But it’s been perfect for the track. I don’t have to worry about getting stranded on the far side, as I can stop and sit any time I need to. Actually, I haven’t sat down yet, but knowing I could makes me push myself further than I would otherwise.

When we started, I was doing good to get around twice, with the walker. Now I’m making two rounds without the walker and two more with it, for a whole mile. Of course, I’m slow, but I definitely see progress! DH is walking with me, and he’s up to 6 laps in the time it takes me to do 4.

I haven’t heard from the Physical Therapy place yet, so I’ll have to call the Orthopedist’s office to get the ball rolling on that.

I spent a very upsetting hour or so trying to talk to Medicare about the charges they denied when Daddy went to the hospital. It’s standard procedure for Medicare to deny any and all claims if the date of service overlaps the date of Hospice service. Each one has to be reapplied for, with a statement of Denial from the Hospice, proving the charge was unrelated to what he was on Hospice for. So the Medicare person was no help at all. I did, however, get somewhere with the Billing Clerk from the Radiologist who didn’t get paid.

Lots to Do Settling Daddy’s Estate

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This is the second time I’ve been the executor of an estate, but Daddy’s is much more involved than Pop’s was. Luckily, we have a niece who is a lawyer, so I’ll have some help when I’m ready. I’ve tried researching what I need to do on the Internet, and I’ve been surprised at how little help I could find. Everything seems to be geared toward Estate Planning, rather than settling an estate.

April 15th is getting closer, too, and I’ve just not been up to dealing with important numbers. I did get a good start today, though. Starting is half the battle for me, as I find I’ve become quite the procrastinator in the last few years. I don’t know if that’s a sign of old age LOL, stress, or Parkinson’s!

We walked again this morning, but I was slow as mud. I made it around for a half mile, using the walker. I’ve been using the walker all this week, but I depended on it more today, as I could feel the tightness in my shoulders when I stopped. That slow as mud feeling is the first Parkinson’s symptom I had, so it’s looking less and less like I’ll be able to continue on just the Zelepar. The Neurologist told me I could go back on the Requip as well, if I felt like I had to. I’ve resisted, because the Requip gave me stomach troubles last time. Well, I had stomach trouble when I was on the Requip – that doesn’t automatically mean the Requip was causing it. It’s that uncertainty that has kept me trying to do without it. I’m just not ready to cope with stomach side effects yet. Maybe next week.

I taught 4th and 5th graders for 25 years, but I’ve seen the “Smarter than a Fifth Grader” TV show a couple of times since I’ve been back home. It’s scary how much my mind goes blank on stuff I know I should know. I hope it’s just remnants of caregiver burnout, and not the PD effecting my mental abilities. Stress can really do a number on such tasks, so I’m trying really hard to relax as much as I can. But getting things accomplished is part of what’s needed to lower my stress level, too, so it’s a matter of finding a balance, I guess.

I continue to be uplifted by all the loving comments. You all really are helping. Just a thought for you, if you need to send a sympathy card to someone. One of our friends included a neatly cut out copy of Daddy’s Obituary notice in their card. It was very much appreciated.

Time I Tried to Catch Up

Day by Day with a Movement Disorder Posted on by 2

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.

Things Have Settled Down Again

Day by Day with a Movement Disorder Posted on by 6

When I posted a couple of days ago, things were looking pretty grim with Daddy. But each time I’ve not been able to get him to eat much, I’ve been giving him his medicine with Boost to drink, instead of water. So, he’s a little stronger now than he was.

Frances stayed with him yesterday, so we could go to Sunday School and church, and have a little free time to ourselves after lunch. Daddy didn’t want to get out of the bed before I left, but Frances said she’d deal with whatever needed to be done. Thank goodness we have someone with him I can actually trust him with. We are very fortunate.

We were pleased to find, when we returned, that he was lucid and had been using the walker all day. DH had a deacon’s meeting to go to, so I took care of supper and putting him to bed all by myself. I did take him to the bedroom in the wheelchair, because he had gone sound asleep in his chair already and he seemed woozy. But I didn’t have a problem making the transfer, using the walker to make the change, instead of having him hold onto me.

This morning was not quite as normal as I would have hoped, but it wasn’t too bad. The hallucinations have been mild today, and he’s walked most of the day. I did use the wheelchair to take him to breakfast, as I had him by myself again. DH had to travel to a family funeral.

We get the hospital bed this afternoon, so that will make a lot of things easier for us. And Daddy surprised me about that. He protested when he realized we had ordered it, but I was able to get him to understand that we had followed his wishes on that as long as we could. He hasn’t fussed about it since. That may change when he actually has to sleep in it, but I’ll deal with that when and if it happens.

Through all of this, the Zelepar has been working just fine. It was definitely the strep throat that kept it from working before. I’m still on the antibiotic, and my throat’s still sore sometimes, but I think the strep is gone finally.

So, all in all I’d say things have settled down again, but I know how quickly that can change. I’ll just be thankful for now and let next take care of itself!!

Update on Daddy

Day by Day with a Movement Disorder Posted on by 2

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.

Can I Keep Daddy in His Own Home Any Longer?

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It looks like it’s time to consider a Nursing Home for Daddy, something I never wanted, and he certainly won’t want.

The last couple of weeks have been busy ones, as far as taking care of my Daddy is concerned. He woke up two weeks ago with his right arm in such pain and so stiff that he’s been having to eat breakfast left handed. He can’t even get the spoon to his mouth with his right hand. The Hospice nurse came and checked him out, but she couldn’t find anything in particular going on. She did get a prescription for Ibuprofen, so I’ve been alternating every four hours with the Motrin and Extra Strength Tylenol. By lunch time his arm has been better, but it starts all over the next day, just as bad as the day before.

With his arm like that, he’s having more difficulty getting out of his chair and the bed. Eating has been very frustrating for him, and he’s having more trouble using the walker. I’ve been trying to help him get up and down, to give his arm a chance to heal, whatever has been wrong with it.

Day before yesterday, the nurse looked at it again and was concerned about a good bit of fluid build up around the elbow and upper arm. I knew his hand was swollen, but I hadn’t realized the upper arm was larger, too. Anyway, she made an appointment for us to see his GP, Dr. M., in case it was a hairline fracture from the original fall, or something like that.

I didn’t realize until yesterday just how much worse Daddy is than he was when he first fell. Trying to move him from the chair to the wheelchair, and then from the wheelchair to the car, was just about impossible. I wore myself out trying to do it. Luckily, Frances, our sitter, was there to help move him into the car, and she was panting by the time he was in. It’s so much different than when we took care of Mama and Pop. They were both small people, not weighing more than 100 pounds, and they both cooperated. Daddy is about 160 pounds, and he’s a dead weight. To make matters worse, he doesn’t trust anybody, so he kept grabbing hold of the car door for dear life, and we had to peel his hands free to get him to hold onto us to maneuver him.

We asked for help at the doctor’s office, getting him out and back in, so at least we didn’t have to struggle with him there. But then, of course, we had to get him out of the car and back in the wheelchair on our own when we got home. He wasn’t any easier to move then than he had been at first.

The whole ordeal was extremely upsetting. The worst part of it was that the doctor no longer has an X-ray machine, so it was more or less a wasted trip. We have to see an Orthopedist next week. That means going through all this again. I did mention to Dr. M. that I had a sore throat, so the nurse swabbed it, and I have strep. So now I’m on antibiotics. At least we accomplished that!

Yesterday’s events have forced me to reconsider just how much longer we are going to be able to keep Daddy in his home. I can see that he’s fast reaching a point where I won’t be strong enough to take care of him. My DH and my Daddy have always had, shall we say, a cool relationship with each other. So DH gets frustrated with him, and Daddy stays mad at DH. My hubby is here for me, and doing a great amount of the work, but he’s just not up to the cheek to cheek “dance” it takes to move someone who’s not able (or willing) to help. And I’ve had a lot more practice at it, too. It is a skilled maneuver, but with Daddy, I’m just not strong enough to do it well.

So, I started thinking about Assisted Living homes vs Nursing Homes last night. I really don’t think an Assisted Living place would take Daddy, but he’s so mentally alert most of the time I hate the idea of a Nursing Home. I don’t think I’m going to have a choice, though. We had visited just about every good Nursing Home in this area when we were caring for my mother and father-in-law, so I have a pretty good idea which ones to check for vacancies.

We have an appointment Tuesday with the Orthopedist, and his diagnosis of what’s wrong with Daddy’s arm will have a lot to do with where we go from there. If he puts Daddy’s arm in a sling, we’re in a mess. So, we’ll get through the next few days as best we can, and go from there.

All this has been happening while I was supposed to be giving the Zelepar a fair trial. Considering how yucky my throat has been the last couple of weeks, and how much more work has been involved in taking care of Daddy, plus the extra stress of seeing him deteriorate, the Zelepar really hasn’t gotten a fair trial. I’m not walking as well as I did with the Requip, but my stomach is definitely better. From recent reading I’ve done, I understand that this is the maximum dose of Zelepar, so that’s not likely to improve, unless it’s because of the increased stress, or because I had strep, and that effected my walking.

So at the moment, my thoughts are up in the air, with lots of questions, but no clear way to answer them right now.