Day 7 - Dystonia and Changing a Light Bulb

Yesterday, one of the light bulbs in my kitchen's overhead light went out. I usually have my dad or one of my brothers change it for me, but the last time they did, it didn't look so hard and I thought I could try to do it on my own.

Let me just say, being able to do it on your own doesn't mean you should do it on your own :) Unless you're planning on blogging about it....

For some reason, I left my walker on the other side of the kitchen (not near me). I didn't think I would need it. Wrong! So there I am, standing in the middle of my kitchen with nothing to balance myself with and I start unscrewing the light fixture. That's when I realized I was in a little bit of trouble. First, my legs and arms were already shaking. I think this was in part because my foot and hand already started cramping up when I raised both my arms above my head and was trying to get the fixture off its base. Then when I got a hold of the fixture, it ended up being a lot heavier then I thought it was going to be and that caused me to shake. If that weren't enough, I realized I didn't have the new light bulb with me. I can only guess my thinking was that I would take the old bulb out first and throw it away and then return and put the new bulb in. It's never as easy as I plan it out to be!

The way that the light fixture works (I found out AFTER I started taking it down!) is that I have to unscrew it, but it only comes down halfway before the piece holding the drawstrings (which are actually threaded through the light fixture) in place stops it from coming all the way off. I know I am not explaining this correctly at all, but you'll just have to trust me. I'm sure it comes completely off, however, it was heavy enough for my arms to start shaking and I didn't think I'd be able to get it all the way off without dropping it myself. I was losing my balance fast.

What's supposed to happen is, I should be able to hold the fixture in one hand and unscrew the light bulb with the other and then replace the light bulb and then bring the fixture back up to the base and screw it back in. However, because of dystonia, my legs and arms cramp up and twitch and twist and I was having major problems staying upright. A normal person would have had no problems with this, but I found myself panicking a little. I felt like either I was going to fall or the fixture was going to fall. If I fell, yes it would hurt, but I wouldn't break anything (hopefully) and I'd be OK. If the fixture fell, it would be a HUGE mess of which I would have to clean up and possibly cut myself on and then I'd have to buy an all new one.

I weighed my options.

Me or the fixture?

Me it was!

I'd take the fall instead of the fixture. I hoped it wasn't going to be me AND the fixture :)

But before I sacrificed myself for the good of the fixture, I tested to see if maybe, just maybe the pull strings would be strong enough to support the fixture for 30 seconds. That's all I needed - 30 seconds. Time enough for me to grab my walker and the new light bulb and finish the task. Please, God, let it hold and don't let it come crashing down.

I lowered my arms all the way and it held. I thought, "this is too good to be true". It's going to hold but as soon as I move it's going to come crashing down and I'm going to fall because I'm already shaky and off balance and having issues. I backed up slowly and made my way to the walker, all the while praying that it would hold. I grabbed the walker and balanced myself again. I got the light bulb and prayed I'd have the strength to hold the light fixture and screw the light bulb back in.

I got back to the fixture and guess what?! IT HELD!!!! It held until I could get it in my hands again!!! Praise Jesus :) So I now had the fixture in my hands and the walker right beside me to steady myself with. I grabbed the light bulb (careful not to lose my balance) and then screwed it in. I brought the light fixture back up to its base and screwed it back in. I did it!!!!!!!!!!!!!!! Well, me and God did it :) Thank you, Jesus for all the help!!

Lesson learned. I'll be contacting Dad or one of my brothers or a friend or a neighbor to be changing that light bulb again. I proved to myself I could do it, but from here on out, I'll let someone help me :)


The infamous light fixture. Sorry. it's kind of a bad picture, but you can get the idea. I'm almost embarrassed to post this picture because I know most (if not all) people would have been able to do it without any problems. But, oh well. Dystonia may make my body twist and twitch, but at least I proved to myself I could change this light bulb!

Day 6 - Dystonia: Different Kinds

Today's been a busy, fun-filled Saturday. This is the first chance I've had all day to sit down and "write" a blog post. So, since it's late and I'm tired, I'm just going to leave you with this picture describing the different kinds of dystonia.

FYI, I have the generalized dystonia.

Day 5 - Dystonia and Using a Walker

I'm going to come right out and admit: I can't stand having to use a walker. I use it every day, all day, but I still can't stand it! :)

When I first started exhibiting symptoms of dystonia, I had no way of knowing that I would one day have to use a walker to get around. I distinctly remember having the thought that as long as I have the ability to walk, I'd be OK in this life - HA HA HA!!! It's hard to admit that that is what I thought, but it is just that. Looking back, I cringe at it. I cringe, because who am I to say whether I walk or not? Whether I can see? Whether I have good health or not? Isn't that God's business? And doesn't He have the right to give us those blessings or allow them to be taken away so that we may see that we are but dust and to dust we shall return? I'm slowly learning this!!

At the same time though, I am human and being human, I am highly embarrassed having to use a walker. I'm 34, not 94. When I started using it full time I was 28. No matter what anyone says, I don't like being "the girl with the walker" - and yet, I am! It has gotten easier to accept over time. But, then, there are the days when it feels like it's the first time I'm using it and all those feelings come rushing back in of not being good enough, of being disabled, of being embarrassed. I struggle all the time with my feelings on having to use a walker. On one hand I am extremely blessed and grateful that I have it and that I can get by with it. I can live on my own, drive a car, go to work, go to the store, go anywhere I desire and then on the other hand, I'm bitter and mad and sad and angry that I have to use one. Nothing anyone can say or do can or will take those feelings away and I know that. Only God can do that. Only God can give me the grace to accept it, to deal with it, to thrive with it. I have to accept it for what it's worth. But, I'm not there yet. I battle every day.

Having dystonia and using a walker has opened my eyes to the fact that everyone deserves to be treated kindly. No one deserves to be stared at. I've been convicted of this. If I ever find myself staring at someone who is different, I stop immediately. I know how it feels now to have people stare and I can't stand it, so I try my very, very hardest not to do it to others. It is hard though. Human nature is to stare, to wonder what's wrong with someone. I have no qualms telling anyone what's wrong with me, if they ask. That's the key though: ask, don't just stare. I know this is hard, because I've had to deal with it too - wondering if I should ask someone what's wrong with them or just leave it be. My personal preference is that you ask me what's wrong or act toward me like using a walker is something everyone does :) I have to give huge props to my co-workers and my church family. No one makes me feel unloved or like I don't belong.

I've always had a rather shy personality, but having dystonia and using a walker has brought out a side of my personality I didn't know I had. I can be bold and courageous! I can be tough! I can be strong! While I still cry easily and get my feelings hurt even more easily, I'm beginning to see signs of tough skin growing! I'm no shrinking violet. I'm a blooming tulip (I only use tulip, because it's my favorite flower!!). God's not done with me yet. On the flip side though, I've seen where having dystonia and having to use a walker has made me callous and unloving. I snap at people and get annoyed more easily. I'm jealous of what others have. I'm hateful towards people. I am not proud of any of this and I'm praying every day that God would help me to be kind and loving, not jealous and to be happy for others when life brings them pure joy. I like the toughness and the boldness of my personality shining though, I despise the jealousy and the callousness. I'm a work in progress (as we all are)!

I'll end on this: A walker is just that, it helps me walk. The walker is not me in a nutshell, but it does help define me. I say this because without having to use a walker, I might not have ever met some of the people I've met and I may never have talked to some of the people I've talked to and I may never have had any impact on anyone. I'm beginning to think that the walker is just one of God's many tools that He's using to define me, to refine me and to make me into the person He wants me to be. Yes, I'm still going to be embarrassed from time to time, yes I would still rather walk with my own two feet than have to have the assistance of a walker, but who knows - what if some of MY life's greatest blessings come BECAUSE I walk with a walker?

Before my makeover of the walker:

After my makeover of the walker:

Day 4 - Dystonia and Exercise

I've written about exercise before on this blog, but I'm going to write about it again.

I never in a million years thought I would be one to talk about exercise and it's not because of the dystonia. I just didn't like exercise, so I didn't do it. I don't know why I was so opposed to it. For as long as I've been alive, my dad has always jogged and worked out. Mom would do the exercise videos and my brothers were all in to running or sports. But, I got the "let's sit in front of the TV and eat chocolate" gene in the family and I was proud of that! We all know how much I love TV :)

But then something amazing happened....

I do believe it is a God thing.

I like to look at it like this: my ability to walk without assistance is gone (at least for now!), but I've found freedom and strength in exercise.

What I once loathed, I love now.

Amazing. Absolutely amazing.

I'll tell you, it didn't come overnight, but it came! I may have to walk with a walker, but I can sit on a recumbent bike and exercise. The bike is a blessing. Of all the exercises I could do, I find that the bike is the one that I can do with the least likely chance of me getting hurt while doing it. I'm a klutz to begin with and add dystonia into the mix and I'm a walking (falling) advertisement for a doctor's best friend. I mean, I've even fallen (a lot!) while walking with the walker. It takes talent to do that, people, talent, I say! :) I'd probably keep every emergency room in business if I had to ride outside on a "real" bike or jog or even get on a treadmill. While, this may be a good thing for my brother (who is an ER doctor), I don't particularly want to spend all my time in an ER, so....sitting on a recumbent bike it is! And the best part is - I get to watch TV while doing it! OK, that may not be the best part. I think the best part is the accomplishment I feel when I'm done. The "runner's high" (or should it be biker's high?) I get after a good workout. I even love the sweat that drips from me after I'm done. What has gotten in to me?!! :) So yes, I may have dystonia and I may have to walk with a walker and I may feel defeated some days or frustrated, but I can exercise. God's given me that gift and I'm not about to throw it away. Thank you, Jesus - for when one thing is taken away, You replace it with something else.

Day 3 - Dystonia and Umbrellas

One thing (of many, I can assure you!) I never thought about before dystonia became a part of my life, was the fact that it is very, very difficult to walk with a walker and hold an umbrella. It's not something that just comes to mind like "Oh wow, if I ever had to walk with a walker, how would I also manage holding an umbrella?" No one ever thinks like that :) Or, at least, I never thought like that! But it's one of the many "obstacles" I've had to figure out since having to use a walker. To say I have it figured out, well, that would be lying. I don't. In fact, I gave up on it altogether. But when I was in college (pre-dystonia), I had an awesome umbrella. It was dubbed "Austin Powers" for its wacky and bright colors and design. It was the perfect umbrella for a college kid, because in a sea of black umbrellas dumped at the door of the cafeteria, "Austin Powers" was super easy to spot. I loved that umbrella! On a wet day it kept me dry and its colors brightened my spirits. When dystonia set in, I had no clue that something as simple as carrying an umbrella would become such a task! It never even crossed my mind that one couldn't hold an umbrella and walk with a walker at the same time, but let me tell you -it takes talent and coordination to do this, neither of which I have (hence the need to walk with a walker!). I soon realized, I was left in quite a conundrum. It was either use the walker and get wet or use the umbrella and fall. So, "Austin Powers" had to be retired. It was a sad day. He was a good umbrella, a loyal and faithful friend, but he was just too dangerous for me to use any more. We'd been through so much - four years of college and several years in the working world. He even got lost once in Ohio, but my best friend found him and gave him back to me as a Christmas present. We had a good run. He served me well. And I'll always have the memories and a picture of him for posterities sake:

So now, I use a much safer, reliable and boring raincoat (with a hood, because a raincoat with no hood defeats the purpose - at least in my mind!). Yes, I guess rain coats can be fun too, but for me, not quite as fun as my "Austin Powers" umbrella! Oh the memories!! :)

Day 2 - Dystonia and Grocery Shopping

Going grocery shopping - some love it, some loathe it and some are indifferent to it. I myself, never gave it much thought until dystonia settled in. The thing is, I'm not quite sure people understand what grocery shopping entails for me (or others with movement disorders). So this blog post is going to enlighten you on how I go grocery shopping. It's also what I did today so it's fresh on my brain :) I know, you're thinking, "great this should be LOADS of fun" (said in a sarcastic voice) - but I do intend to make it worth your read, or at least make it somewhat funny....we'll see how I do....

Before I go to the grocery store, I have to be out of everything and I do mean everything. It's go big or go home....I'm either going to buy the store out or not buy anything at all. I've only got so much energy, so I use it all in one fell swoop! On the way to the grocery store, I'm praying on repeat that there will be a handicap space open right in front of the doors (because there ARE spots that are farther away) and that there is a cart right by the parking space. And here's my confession: I love - absolutely LOVE when people don't return their grocery carts to the grocery cart receptacle. I'm not being sarcastic here! Since I use a walker, I can't walk to the grocery cart receptacle to get a grocery cart without having to use the walker. So if I do have to do that, I end up having to load the walker into the cart and then return it to my car and by this time, I've spent 10 minutes just in the parking lot getting ready to go into the store - so I love, love, love all you "slackers" out there who leave carts right by the parking spots!! Thank you, thank you :) IF, I don't see a handicap parking spot with a cart right next to it, I start looking for the nearest spot that does have a cart next to it. If I can't find one of those, I look for the nearest grocery cart receptacle and hope that there is a parking spot right next to it. If, I've worn out all those options, I've been known to circle the parking lot 4, 5, 6 times waiting (not so patiently, sometimes!) for someone to come out and vacate one of those "premium spots". I've also been known to completely skip the handicap parking spots (with no carts beside them) in lieu of a spot that does have a cart. There have been times, I've been so frustrated in not finding a spot, that I've left and gone home without going into the store at all. I say all of this not for pity in the least bit, just to let you know what goes on sometimes when I think a grocery trip will be about half an hour and it ends up being an hour and a half :) Sometimes, it's just getting in the door that trips me up (pun intended!).

Once inside the store, I'm pretty much OK. Although there have been times, when I can't seem to move at all and it's all I can do to get essential stuff and get out. The thing about walking with a grocery cart instead of a walker is that, people don't know there is anything wrong with you. That's both a good and bad thing! When I'm having a really bad day walking, you can tell even when I'm walking with a cart. So then people tend to just stare at me (even more then they would with a walker) and wonder why I'm being so slow. Which, they did today. My dystonia symptoms get worse under stress or really any highs or lows (so if I'm really excited about something they tend to be worse or if I'm really sad about something, they again tend to be worse). Today, I decided to run (haha, OK, bad use of words, but anyway....) to the store on my lunch hour. I only had a few things to pick up (which I'll admit is unusual for me!). But the "stress" of having a time limit, led to me having more pronounced dystonia symptoms. It wasn't that I was actually stressed, it was that my adrenaline kicked in and that led to more pronounced symptoms. There was a lady in the store today and I guessed her age to be around 80 and she was flying by me!! I actually had to smile because it struck me as funny. I do try and get everything that I need in the vicinity before moving on to another part of the store, because having to retrace my steps for something that I forgot can be torture sometimes. I've been known to just do without, instead of going back to get it.

Getting out of the store is another adventure! Most stores have a decline - if ever so slight - when you emerge from them heading to the parking lot. I never really noticed that myself before, but now, I notice it all the time. This is because going downhill is torturous for me. I feel like I'm losing all control and I just can't do downslopes (however slight they may be!) without great difficulty. So - getting out of a grocery store has me hanging on to the grocery cart for dear life! I'm praying that 1) The cart doesn't get away from me and 2) I don't get away from the cart. I've fallen before doing this and let me tell, it's highly embarrassing! Another "obstacle" I have to overcome is traffic. It's not usually a problem going into the store (because there is a slight incline and I have much more traction on those!) as I usually can stay with the pace of everyone else. But coming out of the store, is a different story altogether. I try to cross when there are no cars anywhere in sight, but obviously, that's not always possible. I feel SO bad for the people who wave to me from their cars to go ahead and go. I feel bad for them because I think to myself "they have no idea what they just signed themselves up for!" It takes me forever to cross the parking lot - especially with people watching me. I try to psych myself up and tell myself that I don't care what they must be thinking of me (for being so slow!). Most people who are waved across tend to hurry themselves up, so as not to keep the driver waiting too long. I happen to be just the opposite. And, not on purpose - I promise!! So, if I've done this to anyone reading this blog - I'm sorry, really, really sorry!!!

By the time I get to my car, I'm usually pretty exhausted. I load all my groceries in the car and leave the cart by the parking spot for someone else who needs it :)

When I get home, I will usually back my car into the garage, so that the trunk is closest to the door to the house. This way, I again have less of a ways to walk. Surprisingly enough, carrying groceries sometimes eases my symptoms. It's hard to explain, but I guess the weight of them pressed up against my legs eases the tension in my legs and makes we walk better. I'm not explaining this correctly, but what I thought was a "genius" find on my part is actually already known in the medical world. You see, I started realizing that if I were to touch my leg or foot when it was having a spasm, it would relax itself. It's a sensory trick. If you touch the affected part of your body it sometimes relieves the symptoms. Pretty cool :) Anyway, doing that with the groceries, helps me walk better, so I usually don't have any problems getting them into the house.

And there you have it: me grocery shopping with dystonia. So the next time you're at the grocery store, I give you permission to leave your cart by your parking spot and hurry up and not let anyone coming out of the store walk in front of you as you get to your parking spot. Grant it, you're not going to make the employees of the grocery store like you very much and you may make some people angry at you for not giving them the right of way, but then again, you may be helping someone you don't even know! :)

Day 1 - Dystonia Awareness Month

Happy Labor Day and Happy Dystonia Awareness Month!! I hope your day has been great. Mine's been spent doing paperwork at home - oh joy :) but, it has to be done. The funny thing is, I started this "paperwork" (basically just organizing all my monthly bills and receipts) because I was looking for a particular receipt - 7 hours later all my paperwork is organized and neat, but the receipt still remains to be found - oh well!! I also spent the day trying to figure out how I would start this blog challenge (that I brought on myself!) to raise awareness for dystonia. And just like that elusive receipt I was searching for, I haven't come up with a brilliant idea of how to start. I know most (if not all of you) have read my Facebook blog posts that started the same time my symptoms started and then went all the way through me finally getting a diagnosis, so I don't want to bore you with all of that again! If you didn't happen to see those and really, really want to know EVERYTHING, I transitioned those posts to this blog and they are the second blog posting. But I'll warn you, it's LONG :)

I decided that I will, however, give a brief introduction to dystonia by giving its definition.

First and foremost:



Dystonia, as defined by the National Institute of Neurological Disorders, "is a disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may be painful, and some individuals with dystonia may have a tremor or other neurological features. There are several different forms of dystonia that may affect only one muscle, groups of muscles, or muscles throughout the body. Some forms of dystonia are genetic but the cause for the majority of cases is not known."

Dystonia is classified as a movement disorder. Other movement disorders include Parkinson's, Huntington's, essential tremor and others. Believe me - when I started having symptoms, I thought I had every one of the catastrophic diseases. But, nope, it turns out, I have the one that no one's ever heard of - including myself! It took 5 long years to figure it out, but I did eventually get an answer. It wasn't the answer I was hoping for, but it was an answer. I was hoping for the "quick" cure: give me a pill, do surgery - whatever, but I wanted it fixed. It was around this time that I also learned I am a VERY and I mean VERY impatient person.

I have adult-onset hemi-dystonia. This means that I was over 21 when I was diagnosed (I started having symptoms at 25 and was diagnosed just before my 30th birthday). And hemi means it affects one side of my body (my left). Although it's most evident in my leg and foot, it's also present in my arm and hand. I started off constantly tripping and very rarely being able to catch myself before falling. It progressed and I started having to use a cane to get around. It progressed even further and now I have to use a walker about 90% of the time. I'm just hoping it doesn't progress anymore! Thankfully, it has not!

That's a quick summary of my initiation into the world of dystonia. I promise to be more entertaining in upcoming posts. I just wanted to start off basically with what dystonia is and my life with it. I will say, while it has caused a lot of tears to be shed, I don't spend my days crying my eyes out (as I once thought I would!) I have learned to live with it - not always gracefully and not always with a smile on my face, but it's life now and I can say truthfully that I live a very blessed life!