Tag Archives: Quality of Life

Visible vs Invisible Disabilities

Day by Day with a Movement Disorder Posted on by 2

It’s absolutely amazing how wonderfully helpful and concerned total strangers have been since I started wearing the neck brace out in public! Not only are they helpful, but they also strike up a conversation with me, usually asking if I was in an automobile accident. We ate lunch out yesterday, and a waiter who wasn’t even taking care of us stopped by to ask what was wrong with my neck! I can’t imagine that people would be so interested if I had an arm in a sling. So I think at least part of their questioning is that people “enjoy” hearing stories about wrecks! LOL!

But I digress. This sudden “visibility” (that I have avoided for so long out of self consciousness) affirms that most people have a kind heart toward those with disabilities, but they are usually too preoccupied with themselves to notice those who are struggling with everyday activities. I must work at being more conscious of others when I am in public.

I think of all the people dealing with the various Movement Disorders who don’t use a cane or walker, but who find even walking around to be difficult. I’m sure most don’t want to be seen as disabled, but I’m sure they would all appreciate the little kindnesses, like holding a door open for them. But without that “hit them over the head with it” obvious indication of limited abilities – people just don’t notice they could use a little extra TLC.

I know that has been true for me for a long time. I’ve been uncomfortable with the idea of being seen as handicapped, although I’ve been grateful to have and use a Handicap Sticker for the car. But I’ve also been saddened that friends didn’t notice that I’m struggling. Then I start fussing at myself that I’m having a pity party and to get over it. I can’t have it both ways, I tell myself. I don’t want to be one of these people who is constantly listing all their current ailments, aches, and pains, so it’s my lack of voicing how I’m doing that prevents people from realizing I’m having troubles.

The neck brace has very quickly changed all that. It’s a shame it took using it to cause people to notice the problems I have had for a long time with simple activities like walking.

Still NO Test Results!

Day by Day with a Movement Disorder Posted on by 2

Our patience has grown very thin, but there’s not much we can do about it. I went through 3 hours of neurological tests week before last, and we still haven’t heard back from the doctor. I was already having misgivings that the doctor and I had a language barrier. So this isn’t making me any more comfortable with him.

Plus, I don’t lie flat well at all. I sleep in a recliner and have for years, so that 3 hour stint flat on the exam table, under so much stress and tension, has my neck dealing me fits. I’ve been using my TENS machine and the hot pad, plus I keep a soft neck support around my neck while I am sitting. I’ve taken more pain meds in the last week than I have in a very long time. That is very ironic, since the UAB doctor kept asking me where I was hurting…and I kept telling him I wasn’t. HUH! Now I AM!!

I do have an appointment with my own Neuro next week. Unless we hear something soon, he’s going to get an earful from us about the UAB doctor!

As for my current situation – it’s very difficult for me to walk – very slow and labored, and sitting without a neck support gets very painful. I end up propping my chin up with my arm…fist under my chin.

40 Blogs to Follow for Parkinson’s Awareness Month

Day by Day with a Movement Disorder Posted on by 2

We’ve been included in another site’s list of top Parkinson’s blogs! I feel very humbled to be recognized in such an article. Each blog has a short description of its content and focus and would be an invaluable aid to a caregiver, newly diagnosed Parkie, or long time PD patient who needed to make contact with others who understand what living with Parkinson’s Disease can be like.

This blog is included, because my original diagnosis was Parkinson’s, and you’ll find many posts about my efforts to deal with those changes it made in my life. Also, I have accumulated a lot of resource links on the side bar dealing with all kinds of Movement Disorder related issues.

I think back on my early frustration at how few places there were on the Internet to get a glimpse of what it was like to live with Parkinson’s Disease. I decided then that I would try to keep that from happening to the next person who tried to get a personal view of living with Parkinson’s. Now I read about all these great blogs available, and it makes me glad that I have had a small part in helping people understand not only the physical, but the emotional and mental side of being a person with a Movement Disorder.

Disk & Muscle Spasms Rear Their Ugly Head

Day by Day with a Movement Disorder Posted on by 2

For the first time in quite a few years, I’ve been having real problems with my neck and back for the last couple of weeks. It seems to get worse as the day progresses, so by the afternoon and particularly at night I’m really not comfortable at all.

I’ve tried Tylenol and Aleve, but I can’t even tell I’m taking them. I’ve also been having constipation problems again, so I’ve been reluctant to ask one of my doctors for a powerful pain med, knowing strong pain meds would just make the constipation worse.

I’ve been thinking the pain spasms would clear up on their own if I gave it some time. I’ve tried to keep moving my neck and shoulders as much as I can, used the hot pad, and have been using the inflatable neck brace for a short time each morning. It’s way too uncomfortable to use it for very long, but it’s extremely adjustable, and I have all the Velcro sections pretty well suited to my short neck. After I put it on I pump up the bladder in it and it gives a little traction. That helps for awhile, but it’s way too painful to use it after the spasms take over later on in the day.

The human adult head weighs about 10 pounds, and the neck and shoulder muscles have to be strong enough to carry that weight around in all kinds of positions all day long. Just imagine how long your arm would last without fatigue and pain if you were to lift a 10 pound bag of potatoes for 12 straight hours! Normally, our bodies are so wonderfully made that we don’t give it a second thought.

But I have Degenerative Disk Disease and Osteopenia, which means my disks and bones are not as healthy as they should be. I’ve had bulging disks in my neck and lower back for many, many years. So I guess I was overdue for a round of pain with one or the other. This time it’s the Cervical disk that seems to be the focus.

I’m not sure, but the Myoclonus may be making the spasms worse. I was in quite a quandary as to which doctor I should go see, my Neurologist or my Orthopedist. The trigger points seem to be on the right side, not near my left shoulder that does all the jerking, so I’ve decided the Orthopedist makes more sense.

So, it looks like I will be making an appointment with my Orthopedist next week.

Half-Life, What Is It?

Day by Day with a Movement Disorder Posted on by 12

I’ve been on the twice a day dose of Lamotrigine now for about 2 weeks, and hubby and I see some improvement, with less jerking and less depression. As this medicine builds up in my system, thanks to its half-life, I can hope for even better control of the jerks and an even happier outlook in general.

Lamotrigine has a half-life of 13 hours. That means half of the 7AM dose is still in my system when I take my 7PM pill. And half of what is left in my system at night from the 7AM dose, plus half of the 7PM dose, is still in my system at 7AM the next morning when I take another dose. Confusing?? LOL!

What that means is that over a period of time it builds up in my system. The Primidone I take does the same thing. My brain is constantly bathed with these chemicals that somehow calm the erratic electrical activity that sets my muscles to jerking. Neurologists don’t really understand the mechanism by which these chemicals work in the brain, so they just have to keep trying different meds until they hit on the right combination for each patient, based on their years of experience dealing with Movement Disorders. All the meds in their arsenal are off label drugs. That means they are not typically prescribed for Myoclonus. Most are used to control epileptic seizures and some are normally prescribed for depression.

In my case my Neurologist says I have a progressive form of Essential Myoclonus, so I am thankful for the relief I get with a new medicine, even though I realize it may not be sufficient sometime in the future. But my outlook is better these days, so I choose to be happy with the apparent success of this combination and to not dwell on the future. See, I told you I was feeling better!

I thank God for this lifting of the gloom I have been in, as He guides the decisions my Neurologist makes in treating me!

4 Days of Full Lamotrigine Dose

Day by Day with a Movement Disorder Posted on by 4

I’ve been on the Lamotrigine morning and afternoon 25mg dose for 4 days now, and only the first morning caused me any problems. I went back to sleep after breakfast on that first morning I took a morning dose, and I slept almost 3 hours. That is an extremely unusual thing for me to do. But I haven’t been sleepy since then. It may be helping a little bit, but nothing spectacular. I’m still jerking pretty badly if I’m under even the least amount of stress, which seems to be a lot of late.

One of my triggers seems to be getting in any kind of a crowd, so Church is always very stressful for me. I’m very self conscious about the jerking, and I feel bad for the people who sit behind me, as it must be very distracting.

But I’m not zonked on it, as I was when the Neurontin dose was increased. That’s a good thing. And I know I’m on the smallest dose size the Lamotrigine comes in, so there may be some room for adjustment to lessen the jerks a little bit more. I’m hoping that’s the way it will work out, without putting me in a daze the way the Neurontin did.

I don’t think I’ve ever really explained what the Primidone and Lamotrigine prescriptions are for. They are actually used as anti-seizure meds, and the Lamotrigine can be used with Bipolar Disorders and Depression disorders. The Clonazepam the MDS tried me on first, as well as the Neurontin, were also meds used for seizures and depressive disorders. (Which I thought made it odd that they depressed me!) So it’s kind of like taking a pig in the poke for medicine.

Their use for Essential Myoclonus is considered an off-label use, and from everything I’ve been able to read, the medical profession really doesn’t understand how these meds work in the brain. Evidently when they work properly they calm down whatever erratic electrical signal there is that’s coming from my brain that sets off these muscle spasms.

This is where having a Neurologist I trust is so very important, and a pharmacist who watches over every medicine I take, prescription as well as over the counter. I wouldn’t think of buying some of my prescriptions at one pharmacy and others somewhere else. It’s just too dangerous for me.

So I’m trying hard to be hopeful that my Neuro will find a good balance on my medicines and get me back to where I’m not jerking so much. And I’m fighting the blues, although I certainly haven’t won that battle yet.

Off the Depakote, On to Lamotrigine

Day by Day with a Movement Disorder Posted on by 10

My Neuro didn’t fuss at me when I told him I had cut the Depakote dose in half, because I was depressed. Smart man, if he didn’t want a blubbering patient on his hands.

He’s changing me to Lamictal, well actually the generic Lamotrigine. Anyway, this new med can have very serious side effects if not titrated up in the system in small dosage increments, so it will be awhile before I can tell if it’s going to work or not. As I did my research on it, I did notice that it has a half-life of 13 hours. That means when I’m on a morning and night dose there will still be half the medicine in my system when it’s time to take the next pill. I shouldn’t see any ups and downs with it, at least.

I’m trying to look on the bright side of it, in case you hadn’t noticed, as there are some VERY scary side effects possible, although very rarely seen, or course. Isn’t that true of just about every med these days?? I did check with my pharmacist, and he said it would be OK to start taking the Lamotrigine tonight at that small a dose, even though I had the Depakote yesterday morning. There are definite warnings that they should not be taken together, and cautions about taking it with Primidone, which I AM still on. Dr. S. also said I was at the maximum dosage of Primidone he could give me without getting side effects from it.

I finally remembered to ask him to explain to me if my Essential Myoclonus is a progressive disorder or not. At the time my diagnosis was changed from Parkinson’s to EM, we were under the impression that it was not progressive, that it would not get worse, and that was a big relief to all of us.

But I’ve lost close to a third of my body weight at the same time that my Primidone dose has doubled, plus it’s not enough anymore to stop the major jerks. He said that based on that he thinks I do have a progressive version of EM that will get worse with age.

I guess I’d better make hay while I still can, eh? It’s easy to imagine that at some point in the future I will have considerable problems walking again and will have to settle for being zonked to be still enough to have any Quality of Life. I can only pray that that day is a long, long way off and that I will handle the thought of it better when I’m not so depressed.

So, again I have a bummer of a post, but at least I can end with the hope that the Lamotrigine will be a successful drug for me. Primidone gave me my life back for a long, long time. I can only hope and pray that Lamotrigine does the same.

Having Problems with Depakote Blues

Day by Day with a Movement Disorder Posted on by 2

My jerking and twitching have definitely improved since I started taking the Depakote in addition to my Primidone, but as the jerking lessened my blues increased. I seem to be on the verge of tears constantly, and I’m more irritable, too. So, I took myself off one of the Depakote doses – the one at night. I’m not sure if that is going to work, as it took some time to start seeing the good results jerk-wise from the Depakote.

I have a Neurologist appointment later this month, so we’ll see if he agrees with my choice to cut the dose or fusses at me for doing it on my own. Right now I’m miserable enough that I don’t care what he thinks. I’ve just got to do something to feel better, even if it means going back to the jerks.

I know it’s the New Year, and I should be all positive about 2011, but right now I’m just not in a positive mood. Sorry for dumping my mood on you. I pray it won’t last much longer.

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!!!

My Brain is Empty!! Well…

Day by Day with a Movement Disorder Posted on by  

OK, that’s what my hubby has to say about it. We had good news today. My blood work was all OK and my MRI was clear, so that seems to leave side effects of my meds as the reason for my terrible memory. As for the jerking, I had one good day, and then it was back like it had been. So my Neuro told me today to double the dose of Neurontin he recently put me on, in addition to the doubled doses of Primidone I was already on. I’m hoping that lets me enjoy our family time for Thanksgiving without jerking or being a zombie. Neither one sounds very pleasant.

So, we have plenty to be thankful for with this good medical report. May God’s blessings be showered on you as well!