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!

Let's talk about....Dystonia

First let me say that I am highly embarrassed that I have not written on this blog in MONTHS! I am so sorry...life just happened and I haven't had the desire to sit still for a few minutes and update. That's not to say, I haven't thought about it; I just didn't do anything about it :) Summer's been a whirlwind. I'm sure others can say the same (especially all those who are now back in school!) So now, the real reason why I finally decided now's the right time to update the blog!

I've been thinking about the ALS ice bucket challenge that's been going around on Facebook. I think it's awesome to raise awareness of a disease that takes so many lives. I'm thankful it's raised so much money for the cause. But I have a different opinion of it then most probably. I've gotten a little jealous of it. Yes, that's the word I'm choosing to use to describe my feeling: jealous. You see, I'm so thankful that it is raising an awareness for ALS and that so many people are getting into it and doing it, but I'm jealous it's not for dystonia. Dystonia is not a "glamorous" disease. I'm not saying ANY disease is glamorous, but what I am saying is that dystonia is not a disease that famous people have picked up on, championed the cause for, raised money for, insisted that everyday people raise money for -it's a disease I had never even heard of until I was diagnosed with it. It's a disease no one knows about. But it's a disease I hate with all my heart! I hate it so much, I don't even like talking about it. I realized this when I had a conversation with co-workers about the ALS ice bucket challenge which then led into a conversation about dystonia. They encouraged me to make dystonia the new ALS ice bucket challenge and I had to admit that I didn't want to do that because I hate talking about it. Why I hate talking about it so much, I don't know - maybe it's because I'm still, in may ways, embarrassed by it. I hate using a walker. HATE IT. I'm STILL (even after 9 years of dealing with it and 4 years of actually having a name to it) fighting to prove to myself that I don't have it and that I'm "normal". But the truth is, I do have it. I do have to walk with a walker every single day. It does effect my life. It's not going to get better unless we come up with a cure for it. So maybe I should take up the cause. Not because I want to; but maybe, just maybe because I MUST. Something a co-worker said to me has been rolling around in my brain: what if it's YOU that becomes an inspiration to a little boy or girl that has dystonia? Then today, I was standing in line at a store waiting to return something and out of the corner of my eye, I saw a woman staring at me with my walker. If I told her the disease I had, she probably would answer like the 99.9% of the other people I've told with an "I've never heard of that". I hate the stares. I must make people aware of this disease. I don't want this disease. I don't want to talk about it. I don't want to give it the light of day. BUT - I have the disease. I've made up my mind that I MUST talk about it. I MUST give it the light of day. I MUST support the efforts being made to cure it. I really don't feel like I have the strength to do it mentally or physically, but I've got to get the word out. I'm one person. I know I won't win the world over to my cause. But as my neurologist likes to remind me, "Rome wasn't built in a day". I have NO IDEA what I'm going to do to get the word out about dystonia, but I'll get it out - even if it's just by living with it and maybe updating this blog just a little more :)

I'll start with this: September is Dystonia Awareness Month. I'm challenging myself to write on this blog every day in the month of September - whether it's a few words, a picture, quote or a little longer post, I want to take you IN to what living with dystonia is really like on a daily basis, so - pray for me - this is going to be a CHALLENGE!! While, I'm pretty much an open book on things I want to be an open book about, writing every day about a disease I have but don't want will be a challenge. So...I've got a week to prepare and then it's go time!! Have a blessed week everyone and I'll see you back in blog world on September 1 if not before!

His Eye is On the Sparrow

For the past couple of days I have been worried. I know, I know - it's wrong to worry, but I have been nonetheless. Worried about grown-up things - like paying the bills and stuff like that :) I've been praying about it and seeking the Lord's will. But, I'm still worrying!!!

On a side note - I get songs stuck in my head ALL THE TIME. If you don't believe me, ask my co-workers :) They'll tell you that all they need to do is say one or two words of a song and I've got that song stuck in my head for the rest of the day. Same goes for commercial ditties and anything put to music - haha! It's almost annoying :)

Back to why I'm writing this post. So, I've been worried about bills and having "enough". Well yesterday, I was at work and out of the blue I got a song stuck in my head. I had no clue how I got it in my head in the first place since I hadn't listened to it or heard it playing. It just popped in. After thinking about it for awhile though, now - I know exactly how it got stuck in my head: God put it there!! The song is "His Eye is On the Sparrow"

Why should I feel discouraged, why should the shadows come,
Why should my heart be lonely, and long for heav’n and home,
When Jesus is my portion? My constant Friend is He:
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

Refrain:
I sing because I’m happy, I sing because I’m free,
For His eye is on the sparrow, and I know He watches me.

“Let not your heart be troubled,” His tender word I hear,
And resting on His goodness, I lose my doubts and fears;
Though by the path He leadeth, but one step I may see;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.
Whenever I am tempted, whenever clouds arise,
When songs give place to sighing, when hope within me dies,
I draw the closer to Him, from care He sets me free;
His eye is on the sparrow, and I know He watches me;
His eye is on the sparrow, and I know He watches me.

I've had the song rolling in my head non-stop since yesterday afternoon. I was speaking with a co-worker this morning and she told me that having the song stuck in my head was God speaking to me. He knows my needs and will provide. I need not worry. He says it again and again in His Word. My absolute favorite Bible verse re-instates this as well: "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6

I need not worry because God's got me in the palm of His hand.

"29 Are not two sparrows sold for a penny? Yet not one of them will fall to the ground outside your Father’s care.[a] 30 And even the very hairs of your head are all numbered. 31 So don’t be afraid; you are worth more than many sparrows." Matthew 19:29-30

I shall not worry because the Lord has declared that I am worth more than many sparrows!!! And he cares for the sparrows, so I know He watches me!!!

An amazing promise from the Lord! I shall not worry. I will rest "on his goodness and lose my doubts and fears." I hope this post brings you hope if you too may be worrying. "His eye is on the sparrow and I know He watches me". Amen and Amen!!

Easter Weekend Joy: "I'm so happy"

It's taken me two days to write this blog post. I didn't want to leave anything out and yet I know as soon as I post this, I'll think of something else I want to say. Oh well, such is life :) So without further ado, here's a little recap of my Easter weekend.

Maundy Thursday was awesome. My work friend, Debbie came to the service which made it even more special to me. We got to partake in the Lord's Supper - Jesus' body and blood. There's nothing more precious. Here's a picture of the bulletin:

Do you see anything different in this picture as opposed to other Lord's Supper paintings/pictures? Your answer should be yes :) My dad pointed out to the congregation that you'll notice Judas is pictured, but he's the only one that does not have a halo. I thought it was neat.

Good Friday was an overcast day here in Knoxville- how very appropriate! Our Good Friday service is very solemn and somber as we remember the suffering and death of our Lord Jesus Christ, but at the same time it's magical. It's one of the most precious, meaningful services we have and has a very, very profound effect on me each and every year. Here's the sanctuary decorated for the occasion:

Speaking of magical, one of the most awesome things occurred this year after the service. As the congregation was leaving, the sky outside transformed into a stunning scene in which God and only God could have planned and painted for the ending of Good Friday:

The picture doesn't even do it justice. It was in one word: spectacular!

Saturday was the annual Easter Passion Play and egg hunt for the kids at church. It was a blast as usual and huge kuddos again go out to Jeff and Amy S. - the "brains" behind the whole shabang. 

I know there are others too numerous to count that all made Saturday happen and if you are one them and reading this, a HUGE thank you goes out to you as well. I had the honor of helping with the crafts. Here's the craft we did:

In my humble opinion the absolute best part of the Easter Fest at church is the Passion Play:

Hosanna, in the highest! (And, yes, that is a real donkey!)

The Lord's Supper

The walk to Golgatha

The crucifixion 

Jesus appears to Mary

Our resurrected Lord!!

Easter Sunday was a glorious day filled with celebration!!! We celebrate that the grave is EMPTY and JESUS LIVES!!

My God reigns! Sin, death and the devil have been defeated and my God reigns. Hallelujah!

My Aunt Sue, Uncle Vince, Katie, Stuart and Steven before Easter Sunday Services

Mom and I before Easter Sunday Services (the senior pastor offered to take this picture of us - wasn't that nice of him?! It's almost like he is family or something! -Haha)

Dad preached a great sermon, but I have to admit, I think all his sermons are great :)

Steven, myself, Mom and Dad after Easter Sunday Service

I must say we all left church feeling happy. We got to hear the Word of God, were forgiven of our sins, got to sing some absolutely wonderful songs (thanks, John, Carrie and the entire worship team) and even dance. Yes- dance - thanks to a little song called "Happy" by Pharrell Williams. You may of heard of it :) Dad referenced the song in his sermon and let's just say we couldn't let him be the only one that got to dance!! Who said Lutherans can't have fun in their worship services?! We sure did and I couldn't have thought of a better Sunday to dance around and praise the One who gave us life, then on the day we celebrate our resurrected Lord. It's definitely a Sunday I won't soon forget.

After church, Easter Sunday was spent with family. There's no better way.

The Family minus Stanton and Aubrey

Dad, Mom, Aunt Sue and Uncle Vince

He has risen indeed!

I read this verse on Monday night and I think it sums up this Easter weekend perfectly:

"Happy are those who hear the joyful call to worship, for they will walk in the light of your presence, Lord." Psalm 89:15

May you have been as richly and abundantly blessed this Easter as I was and may you dance, as I did, in the presence of our resurrected Lord!