Tag Archives: difficulty walking

More Tests – Still Waiting

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I went back to my Neurologist this week, since I’m still having lots of weakness, odd gait, balance issues, and other symptoms, such as my voice getting very hoarse the more I talk and the later in the day it gets. He had a Jolly’s Test done, which measures how much the muscles in one hand fatigue as they are repeatedly stimulated with an electrical shock.

This was not a fun test at all, but I got through it. Trying to joke a bit, I said something to the technician about this must be what a Taser feels like – and she said the test shock was stronger than a Taser! No wonder it hurt so badly! But, the good news is, my Neuro said he would call that day if the test came back abnormal…and he did not call!

I did have more blood tests done, however, and the results won’t be back until next week. I’m to call and see how those turned out, and then I guess I see him again, probably for more tests. I’m SO ready to feel better!!

In the meantime, since I am not jerking the way I was for the last year or so, he’s cut back my Primidone dose, and I’ve stopped my Triavil, Simvastatin, and Magnesium supplements. I don’t like stopping more than one medicine at a time, because you can’t tell which one was the culprit, but I’m getting desperate now. So I’m not doing this the proper way. I stopped them all at once. So far no additional jerks on the lower Primidone dose, but it’s only been two days. I can’t tell any difference yet, but I can hope that cutting down on my meds will do the trick.

We covet your prayers that God will guide my Neurologist in the right direction.

Seeing Neuro This Week

Day by Day with a Movement Disorder Posted on by 2

I am still very weak, with little energy for standing or walking. I’ve tried to gradually increase my exercise level, hoping to build up some strength, but so far it’s not making any difference. I have been off the Lamotrigine for almost 2 weeks now, so it’s a matter of wait and see what the Neuro thinks when I go back to see him this week. At least I’m not jerking a lot. I’m very thankful for that.

As part of my physical therapy and our weekly outing we call our Date Day, we decided to go to a huge yard sale with hundreds of booths. Knowing my stamina level, I used the walker with the seat, which was definitely needed. It took us about an hour to walk through the whole thing, with a few stops to look at interesting items. But we didn’t find anything we wanted to buy. The seat came in handy, as I knew it would, but I was also glad to have the big swivel wheels. They made the walk easier than the simple kind of wheeled walkers do.

So, I continue to spend most of my time working on efforts to help tornado survivors thru our free Plush Memories Lost Toy Search Service and also a Facebook site called Wedding Dresses for Tornado Victims.

We aren’t physically able to get out and help with the debris removal and other urgent needs of the survivors of the April 27th tornadoes in Alabama, but I can help through the computer.

We have well over 150 Fabulous Finders eagerly awaiting their chance to unite replacement stuffed animals, dolls, and blankies with the children who lost them during the storms. And the Facebook page now has over 50 Wedding Dresses, Bridesmaid’s Dresses, and other wedding related apparel donated, as well as donations of wedding related services, such as invitations, alterations, and flowers.

I’m now trying to find ways to reach out to the pastors of churches that were damaged or destroyed during the tornadoes, hoping to find the brides who will need help with their weddings. And I’ve reached out to several Toy related sites on Facebook, so they know that we can help individual families replace the most precious of lost toys.

So I stay busy, doing what I can, and pray that my Neurologist will be able to find some way to help me get my strength back.

Praying the Depakote Works

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I heard from my Neurologist Wednesday, and he’s trying me on Depakote, instead of the Neurontin. So far I’m not groggy, but I’m still jerking. Hopefully not as bad as I was, though. Today should be the test of it, as it’s had time to get fully into my system now. So, we’ll just wait and see. It does have some possible side effects that aren’t good, such as weight gain, so I’ll have to start weighing regularly again. And watch what I eat, too, as I had been splurging a good bit lately. But I’m not counting Thanksgiving.

It’s strange how they attempt to medicate the symptoms of Essential Myoclonus. Both of my meds, Primidone and Depakote, as well as the Neurontin he took me off of, are anti-seizure meds. But the EEG showed that I’m not having seizures. They really don’t know how these meds work for some people, and for that matter they don’t know what causes EM, either.

We had an enjoyable Date Day yesterday, going to the Galleria and walking around, mostly to see the Christmas decorations. But it’s not like it used to be. There were only token, if any, decorations in the stores, and they didn’t have a Santa in the mall, either. It’s sad to see how “politically correct” everyone’s become, but they sure want our money! But the mall itself was pretty, and the walking was good for me. And we did get some shopping done, but not at the Galleria! Hurray for “dollar stores” (I can remember when they were 10 cent stores)!!

I’ll try to get some more housework done today, and I’m praying that the Depakote works. My walking is still very unsteady, but that may be from lack of enough exercise. Might as well get a clean house while I build a few muscles, eh?

I hope you all had a wonderful Thanksgiving, as we sure did. And I’m thankful that my Neurologist does have some choices for meds to try for me. I pray that he finds the one that stops the jerking.

Thanks be to God for all his unspeakable gifts! He has blessed us in so many ways, particularly that my wonderful hubby is here by my side to help me in any way I need. I don’t know what I would do without him. I love him so much!!

I pray that you keep Christ as the center of your Christmas giving and celebrating, and that you and your family enjoy His Blessings during this holy time of year.

WAAAAAY Too Much Meds!!!

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Well, I found out one thing the last few days. I can’t handle 2 Neurontin pills 3 times a day, on top of 3 Primidone pills twice a day. I stayed in a stupor from Monday through Wednesday, trying to give my body a chance to adjust to the new meds level, but I just couldn’t take it. So, in order to enjoy Thanksgiving with my family, I took 1 Neurontin Thursday morning, and none at lunch. Then I took 1 with a light supper. I’m only taking one with each meal now, and we’ll see what the doctor says on Monday. If it weren’t for the “walking on Jello” feeling I have when my foot jerks unpredictably while I walk, I would put up with the shoulder jerks, rather than take the extra medicine. But I’m unsteady on my feet without the meds, plus seeing the slowing called Bradykinesia, and unsteady from being looped when I’m on them, plus the slowing. Go figure.

But we had a very good Thanksgiving together as a family, and I enjoyed being with everyone – especially our daughters. Of course, I enjoyed seeing our grandkids, but they spend most of their time texting and playing games, so we don’t see much of them. Our younger daughter cooked a beautiful turkey, and our older daughter did a lot of the other cooking. She made the girls shuck and scrape the corn. That was fun, because they had never done that before. It brought back memories, because it’s been many years since I shucked corn, either. I even got a great big hug from my “cool” grandson, which was extra special!

I must admit that all the hustle and bustle of preparing the food on Wednesday wore me out, even though I did very little to help. Mostly I just sat in a daze. LOL!

So I have a lot to be Thankful to God for this year. Our family has been through some rough times, but things are being dealt with as best we can, and with God’s grace, time will heal the worst of the wounds. We are so much more fortunate than many that there’s no way I can count all our blessings. Thanks be to God for His unspeakable Gifts!!!

I’m Jerking Less, But Walking on Jello

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I have not jerked as much yesterday and today, but I can certainly tell I’m on a new med. I’ve been sleeping much more and much more deeply. That’s not necessarily a bad thing, and will probably become less pronounced as my body adjusts to the Neurontin. My legs, however, have been much less dependable. It’s hard to say if I’m shaking more, losing my balance, or if my legs are just weaker, but whatever is going on … I’m definitely having some difficulty walking. I have that walking on Jello feeling again, and I haven’t felt like that in a long time.

But I’ve only been on the Neurontin for 4 days now, so let’s hope these are side effects that will subside. I should find out the MRI and blood test results Monday hopefully. I don’t expect them to show anything, but it will still be good to have the results. Patient? Me? Not hardly!

Doing Great!

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I’m really feeling good these days. My stomach is behaving itself, and I’m encouraged by the strength that is returning to my legs. I was able to manage a couple of fairly steep driveways on our yard sale haunts on our Date Day without using the cane. That’s quite a victory for me, as I can’t remember how many years it’s been since that was true.

I’m gradually adding back in all the supplements I was taking before my stomach got ulcerated again, and so far there’s been no stomach problems. That’s a true blessing.

I’m also encouraged by my ability to learn about the new programming language that our new sites are written in. It’s slow going, but I am gradually understanding how the code is working. I’m very proud of that.

I’m still going to sleep most nights at 9:00PM and getting up around 5:00AM, so I’m getting plenty of sleep. I usually only wake up once in the night to make a bathroom trip, so my bladder is behaving, too.

I’m getting closer to my goal of losing 50 pounds by April 1. I may not hit the date exactly, but I’m not going to miss it by much. With the lowered rate, and the care hubby takes with his grocery shopping, my blood glucose numbers have been mostly excellent for some time now. Of course, there’s the occasional high number, but I usually know what I’ve eaten to cause it, and learn accordingly.

All in all, I’d say I’m in the best physical and mental state I’ve been in for years, and I hope it continues.

Still on Acai, but Cheaper!!!

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I’ve returned the unused portion of the mail order Acai. Now it remains to be seen if they do as they said and have really closed my account. They were very pleasant and easy to deal with on the phone, so only time will tell if the horror stories I read about on the internet were just that – stories.

I decided to stay on the Acai if I could find it locally for a reasonable price. Walmart had it, although they are out right now. We’ve tried two different stores, but no luck. GNC has a capsule that is a mixture of Acai and Green Tea. Since I drink so many herbal teas each day, I’d rather stick to a pure Acai capsule or gelcap if I can.

My exercise routine is coming along pretty well, except I’ve had to stop using the bicycle. I thought I was being careful to limit my use, but even at 5 minutes in two separated sessions my coccyx is still complaining. I’m sitting on the Roho cushion now, trying to get my tail bone calmed down again. But I can use the trampoline for up to 15 minutes at a time now, and I’ve added lunges and a complete set of arm exercises to my morning routine. I even did my squats with a 3 1/2 pound set this morning.

You’d think as long as I have been exercising now (in my fourth month straight) that my walking would be easier. I can tell the difference a little climbing stairs, but my walking still seems so stiff and unnatural.

Nothing I am doing stops the brain fog, though. It’s usually less noticeable in the mornings, but evenings find me struggling to follow any conversation. I’ve reached the point where I can enjoy reruns on TV, because I can’t remember having seen them before. LOL! At least I’m easy to entertain!!!

I continue to be upbeat and pleased that I have been able to keep the exercise routine going so long. My digestive system has settled down again, so I am not having any elimination difficulties right now. Hopefully I will soon reach a level that helps me to lose some weight.

We are still getting quite a few sales from our Plush Animals Catalog, although certainly not at the rate it was before Christmas, and I continue to add more items to the catalog just about every week.

So, it’s been a good week, and I look forward to an even better week this week.

Just Learned about WalkAide for Foot Drop!!

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I don’t have Peripheral Neuropathy any more, and our daughter who was hospitalized with horrible Neuropathy problems a couple of years ago, including foot drop, is doing much better now. You can read all about her problems resulting from Gastric Bypass Surgery, if this is of interest to you.

But when I read a new post on PLM today about this device called a WalkAide, I was excited by the possibilities!

One member on PLM is currently using it and has only good things to say about how it has improved her gait to a more natural one, and thus made her less likely to fall. She has written about it before and it didn’t register just how revolutionary this small device is, but today I decided to research it.

Someone else on PLM was advised to get this device, but their insurance would not cover it. Since it costs in the $5,000 range it’s understandable that she didn’t rush out and buy it on her own.

So what does the WalkAide do? It’s a small device that is strapped on just below the kneecap that senses the wearer’s foot movement and delivers the correct electrical signal (which the brain may or may not be sending correctly, but is not being received correctly) to the correct muscles to allow the foot to pick up the toes correctly as the foot lifts during walking.

Who can this WalkAide help? ANYONE with a Movement Disorder that causes the foot to drop down when it is lifted would be a possible candidate for this system!

Half Pill More of Primidone is Working Just Fine

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I hesitated to start taking more of the Primidone for the very first time on our Date Day, just in case it left me loopy, but I decided to take a chance. It was just this sort of extra exercise that made the Primidone wear off faster in the afternoon. I had no problem with it at all. Our very first Estate Sale involved a long walk up a steep driveway to get to the house, and yet I was still steady yesterday evening. So that appears to be the correct dose for me right now. As I gradually increase my activity level, I may have to adjust it again. but for now – it’s great!!

I’m still bubbling over such great news and wonderful relief from the jerks, shakes, and twitches. Hubby has been teasing me about how much I’m talking now. He drawls, “It sure was quiet around here,” and sounds just like my Daddy – always finding some way to say something negative. He is teasing, and we both laugh every time he says it. It’s a shame my Daddy never learned to look on the bright side of things, but I learned my lesson well from him and don’t want to ever be that way.

And now I really do have something positive to shout from the rooftops!!! God has blessed me with a wonderful new lease on life, and I can’t give Him praises enough!

Praise GOD from Whom All BLESSINGS Flow!!!

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I can’t praise God enough for how I’ve been lately. I really am doing great, and it’s wonderful to be able to say that. Some days I don’t have any abnormal movements at all, and on others I have only tolerable ones. I have been on cloud nine now for a couple of weeks, and it looks like I’m here to stay.

I have noticed that as I become more active and expend more muscle effort that the medicine wears off sooner in the evenings. The Movement Disorder doctor said to call him back in two weeks, and he would discuss raising the daytime dose maybe a half pill at that time. Sounds good to me. He just doesn’t want me to zombie out on the Primidone, and I don’t want that, either. He mentioned physical therapy to help with the slow walking, but that just does not seem necessary to me. I know how to be safe, and as I feel better I am naturally increasing my physical activity. I’m so used to listening to what my body is telling me that I can judge pretty well when it’s time to quit.

My house certainly appreciates the extra attention I have been able to give it lately! There’s plenty more to do, though. I have about two years of clutter to wade through. When you feel as bad as I have and as unsteady as I have it’s just easier and safer to ignore a lot. Hubby has kept us in good meals and clean clothes, but the “stuff” has piled up.

We celebrated our 44th Wedding Anniversary yesterday. I wrote a long post about it on our Yesterday’s Memories blog, so I won’t repeat that here. The fantastic thing is that even though I was exhausted at night from all we did during the day the last two days, I feel fine today. My muscles are definitely adjusting to more activity.

So I leave this post with a positive outlook and a heart full of thanksgiving!!

Praise God from who all blessings flow! Whooopppieeeeeeeeee!!!