feeling like i'm looking in from the outside

So in the time since November of 2008 that my dad was diagnosed with Dystonia, I have never felt like an outsider in this journey called "life" with other Dystonia patients or families. Now, though, I'm feeling that pressure.

In a crazy and dramatic turn of events, my dad was re-diagnosed with another neurological disorder. This re-diagnosis has changed everything: treatment, doctors, nurses, daily routine, as well as all of our outlooks on life. My attitude toward the medical community has shifted as well as my trust in an initial diagnosis, no matter how straightforward the diagnosis might be.

You can imagine, now, I am thinking about so many things from so many different directions now, gathering my thoughts for a blog post on "Dystonia Daughter" is a little conflicting now. What do I write about? Where do I allow my thoughts to take me? What do I say to well represent those with Dystonia, but to also represent those plagued with other even more unknown disorders than Dystonia? All of these are questions I plan on continually churning in my head but for now, I will share what is going on in my life that has a HUGE impact on the Dystonia community.

The past two Novembers, the DMRF has been lucky enough to have been able to secure slots in the prestigious NYC Marathon that are able to then be used by our organization as a fundraiser. We have had incredible success with this over the past two years and this year, we are glad to say that we have, again, secured slots in the marathon. I am proud to say that 10 (ten!!!) of the 12 runners for the DMRF in the NYC Marathon this year are from the Williamsport, PA area and are people that I call personal friends! These ten individuals are made up of people that had never heard of dystonia before they were asked to run and of people that have run the marathon for us in the past. These ten individuals are a group of friends and acquaintances that decided that they wanted to do this as a team and to help our foundation. We are committed to raising $25,000 as a team and are in the process of securing as much funding as we possibly can from their friends and family. Though this seems like such a difficult task, we are thrilled about it!

Isn't that so cool!?!? I am honored by these ten runners that are all running for an organization that has directed and cared for my family since 2008. There is a married couple in our team, my husband, a couple of DMRF NYC Marathon repeat runners, one that had never heard of dystonia before this opportunity and now has had a family member diagnosed since she committed to running, and each and every person on this team is 100% committed and 1,000% amazing! My heart is with each of them and we are on the journey to begin raising these monies! If you want to help, contact me!!!

Until next time and I can put words to my feelings, this will be it for now!

Continue to allow Dystonia to direct your movements, but not rule your life. And continue to share with all who will listen what Dystonia is as it changes lives - even the lives of those who don't have Dystonia!

-Rebecca

a couple of of new pieces of information

Lately things around here have been quite hectic and busy seeing that I am 9 months pregnant, but there is a lot of new information floating around that I want to share with you all and hope that you all will be willing to share with others, as well.

First off, the fundraising for the NY Marathon is beginning. Tony has a website set up that will accept donations toward his $2500 minimum goal that is required to run on the DMRF team and that website is www.dystonia-foundation.org/tonysharp. Please consider making a donation, as small or large as you can, to support him in this opportunity to run in honor of my dad and all others who can't run! This money will all stay within the foundation and will go toward vital research on the causes and cures for Dystonia! Thanks in advance for your donations to this!!!

Second thing is that there is a petition that needs as many signatures as we can get for the US to recognize September as Dystonia Awareness Month. This petition is set up through the White House and can be accessed by going here: https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-september-dystonia-awareness-month/c64kfwpJ
You must be 13 years old to sign but your nationality doesn't matter! Please consider signing this petition for all of those throughout the US to be able to be recognized in September! Share this link with your friends and family, as well, and ask them to go on and sign it! This takes a mere moments of your day and will make an impact for lifetimes to come if we can get September recognized as Dystonia Awareness Month!

Thanks so much for your attention to these super important opportunities to make a difference in the lives of people with dystonia and very likely, the next time you hear from me, it will be sharing the addition to our family with you all!

Blessings and continue to share what Dystonia is to someone every day! It truly makes a difference!
Rebecca

Gosh it has been forever...

Ok, so if i was keeping this blog up for someone else, i would TOTALLY have been fired by now - ugh! So sorry that i haven't updated until now, but better late than never...... i hope! :)

Advocacy Day in Washington DC was one of the most incredible experiences I have ever had. Let me just say, though, it is not for the weak at heart! This pregnant lady was WHOOPED at the end of it but what a 'good exhaustion'! Tony, Chip and I were able to participate for Alabama AND Pennsylvania and that was just incredible. Something about walking into an office and seeing the state seal of Alabama, the Alabama state flag, and hearing familiar accents warms your heart and even gains you a little credibility with the staffers. All the same, being able to talk about our experience moving and now living in PA and how many people we have encountered that have Dystonia in PA and felt alone, too, was a powerful testimony to the uneducated nature of this disorder and allowed us to passionately and personally ask for change! We had an incredible time and loved every minute of it!

Also, just recently, Tony has finalized his spot in the New York Marathon in November running on behalf of the Dystonia Medical Research Foundation and will be running with a team that also includes a great friend of ours, Emily Miller. They each are in the process of raising their funding (minimum of $2500 each) for the marathon and the foundation and if you are interested in donating, Tony's donor site is: http://dystonia-foundation.org/tonysharp    and Emily's isn't quite set up yet. Please consider donating, even if it is just $10!

On another note, Dad is doing INCREDIBLE! He went to the grocery store with my mom yesterday for the first time in over a year and a half, taken mom out on lots of dates to their favorite restaurant, made a trip to a jeweler to get my mom a piece of jewelry for Mothers Day that she wasn't expecting, and is in and out of the house quite a bit now. Still not driving, but boy is he in a great place compared to this time last year! He is still in the process of treating his Dystonia as he has and continues to make progress and learn a new way of living with Dystonia that he hasn't before.

I hope that this finds you doing well and educating someone daily on Dystonia! Be blessed and until next time...

Rebecca

so much to share!

I have so much to share and such a short amount of time to do it in so I'm going to try to type fast!

Well, Advocacy Day on Capital Hill in DC is coming up in three weeks! I can not wait to reconnect with some amazing friends of mine as well as be able to take my husband and little boy along to spread the love of my dad and the passion for furthering the funding and awareness of this disorder to those on Capital Hill. I got the agenda today for the layout and gosh, it will be a full two days, but gosh, it will be amazing I'm sure! I am most thrilled that Tony is going to be tagging along and joining me in this! Boy am I blessed by my husband to do this with me and to support me in this endeavor so much that he has taken vacation time to do it along side of me! So on April 8th and 9th, know that there will be almost 100... that's right ONE HUNDRED... people spreading the word about Dystonia on Capital Hill and continuing to fight for those of you who can't travel and can't have the opportunity to do so!

ALSO, I am thrilled to say that my sweet husband (have I mentioned how blessed I am!?!?) AND my best friend up here in Pennsylvania are BOTH going to be running in the 2014 NYC Marathon for Team Dystance4Dystonia! This was an endeavor last year that I did with Jen Devore, who ROCKED IT, and this year I get to cheer on my sweet husband and dear friend! More info about this is coming up soon and because I have two people that will be running for this that are dear to me, that means, we have $5,000 to raise for awareness! But I know we can do it and so coming up soon, I will be hitting this hard and heavy! But for now, I am just going to be honored and blessed to have two people who care enough about me and my family to take on this endeavor!

Until next time and further information, know that I am always spreading news and information about Dystonia to those who don't know about it, always advocating for you, and coming soon, I along with 100 others will be on Capital Hill spreading the word and advocating for more research and funding! While I am doing my part, I ask you to continue to do your part.... whether big or small.... it is a part of the process and all parts are necessary! So Thank you from me to you for what YOU do to spread the word about Dystonia, as well!

<><
Rebecca

Advocacy Day should be every day but it's coming in April!

Well there is a lot to catch up on over here at the Dystonia Daughter! First on the agenda is that the Dystonia Daughter, here, is going to be adding one more to our family in July! So be on the lookout for updates as well as some possible gaps in posts come this summer as we will be adjusting to having a 6 year old and a newborn in July. Next on the agenda is that I am so proud to say that the appropriations bill passed by Congress this week included Dystonia on the list of eligible conditions for the Department of Defense’s Peer Review Medical Research Program. AND this program received an increase of $150 million over the FY13 level. This increase in funding will allow more research to be funded and/or for research to be funded at higher levels. This is an incredible success on capital hill and we should be proud of all the groups and individuals who petitioned their congressman/woman to make this happen! Lots of hearts and stories that will never be heard or known were expressed to those in Washington DC and they were heard! YAY FOR A SUCCESS! Now, on the topic of Capital Hill comes my next topic and that is that Advocacy Day in Washington DC is coming up in April! I missed this event last year as I ended up in Alabama helping out my dad during that time and so I am doubly looking forward to being able to participate in this! My intention, though I live in Pennsyvlania, is to be in contact with the Alabama representatives as well as some other southern representatives that won't have representation in DC that month. NOW - all of that to say, if you would like to join me and others on Capital Hill to lobby for change and to continue to keep Dystonia on the front page of DC's mind, contact me and I will get you in touch with those that are organizing this event. It is a powerful event and one that leaves not just our representatives in Washington DC touched and changed, but those that attend speak of it as one of the most powerful opportunities they have experience to share with the lawmakers their struggle and what they are looking for. So join us on the steps in Washington DC and let's continue to make Dystonia known and funded!

OK, so this is a blog that seems all over the map but i'd like to celebrate a victory in my dad's Dystonia battle. He is doing amazing! SO amazing that he was able to take my mom out to dinner last night for her birthday! Now, doesn't that seem like something that we each, mostly, take for granted and take advantage of the opportunity, and even something that those without the disorder don't think about celebrating the fact that OTHERS we love can go out for an amazing birthday dinner, but my how Dystonia changes our perspective on life!

Be changed this day in your perspective and live today as though you won't have tomorrow. Love more, worry less, and live for now! Share your Dystonia story or the story of one you love and make a difference TODAY!

been too long

I can't believe that it has been since October that i blogged here. GOSH - how time flies, we get busy, the holidays are upon us and so much has happened!

Let me start off by saying that the entire NY Marathon was one of the most amazing, incredible, and humbling experiences of my life! I can truly say that just as a spectator, my life and perspective is completely changed. Those people that run are amazing! They fought a fight that only a small percentage of people in the world fight and win. They raised awareness and funds for not only the DMRF but for tons of other organizations as well.

So after the marathon, we journeyed back to PA and resumed the craziness of life. Dad has continued to do remarkably well. Mom had knee surgery and my sweet brother and his wife and their two girls went over to help out and they came through it all beautifully. Dad has loved being able to shop online this holiday season and has continued to gain strength. He is struggling with the cold weather this season. This is the first time that we have really noticed a significant issue with the cold weather, though we've hear people talk about it. Through all this, though, his spirits are high and lifted. He is continuing to draw strength from the Lord and grow in his faith.

God is amazing and continues to do incredible things in our lives that we just are able to sit back and revel at. Snow is on the way, the Christmas season is upon us, and we are beyond blessed. May this find you and your family growing in your strength, faith, and hope this Christmas season! God bless you all!!!

-Rebecca

NY Bound!!!!!

So this Saturday I will be leaving and heading out to go to cheer on team Dystance4Dystonia at the New York Marathon! This is so exciting in so many ways! First off, we have an amazing team that will be there and I am so proud to be a part of something that has done an amazing job of raising funds and awareness for a disorder that is still so unheard of! Another reason I am excited is that I will be vising New York for the first time ever! I cannot tell you how excited I am about this trip! The Lord has absolutely blessed me to be able to have this opportunity and has blessed me with the means and ability to make the trip! Lastly I am excited because I will be able to do this trip and report back to my friends and family in Alabama next week at their meeting how amazing the trip was! I will be reporting back to my dad who is up and about, getting stronger by the minute, didn't have the greatest results from the Baclofen pump but still moving forward, dad. I am proud to say that he is doing great, his heart and mind are in great places, the Lord is helping he and my mom continue to navigate the quirks of a new normal, and his determination is strong.

I hope that this finds you all well, with the Lord on your side helping you see a perspective in life that you wouldn't have seen before and knowing that there are going to be people running in the NY marathon next week for YOU!!!

Stay tuned for lots of pictures and fun stories from New York!

Moving forward

So lately things have been doing great for dad and his Dystonia (knock on wood!!!). He has finally gotten a deck and ramp put outside the back door and he has really been able to enjoy that and get some fresh air on his own while mom is at work! He and mom have finally established a new form of 'normal' and they have settled in to their life and routine. Dad continues to increase his strength every day and that is nice.

"So what is next, if anything" i have been asked a lot lately. On October 15, dad will return to Birmingham to have another Baclofen Pump Trial Injection. The last injection that was done proved to have minimal results yet absolutely no negative results and yet it was deemed 'ineffective'. Because of this, dad had a long conversation with his neuro as well as a consult with a DBS neurosurgeon who all recommended that they re-hash the Baclofen pump, and re-try it! We are quite pleased with this decision and are looking forward to the appointment on the 15th.

We continue to be positive about the results of the trial injection along with continuing to be confident in every day is a new day and a day that dad can increase his strength and stamina.

Also, don't forget that Jen Devore is going to be running in the ING NY Marathon in honor of dad and all others who have Dystonia and cannot run themselves. If you are so inclined to make a donation, even if small, to the Dystonia Medical Research Foundation to help her reach her goal of $2500 and run with Team Dystance4Dystonia, go here:
http://www.crowdrise.com/dmrfoundationnyc2013/fundraiser/jendevore

We will continue to post and keep you up to date on the trial injection and as always, keep sharing Dystonia with those you know, continue to keep your head up no matter what your difficulties are, and continue to keep dad in your prayers for strength and courage during this journey!

Please Help!!!

Ok, friends! So on November 3, 2013, Jen Devore is running in the NY ING Marathon in honor of my dad and other friends of mine and people all over the world that cannot run because of Dystonia. When doing this, though, the NY Marathon requires a minimum fundraising goal of $2500 per entrant. We are currently at $945 and are really anxious to raise the rest of the money! All the money is going to the Dystonia Medical Research Foundation and their agenda to find a cure for Dystonia!  What Jen is doing for my dad is something I cannot do, run a marathon, but I can surely help her raise awareness and the funds to let her run on behalf of my dad and all the others affected by this disorder.

Now, your part is easy. All you need to do is commit to sponsoring Jen. Please donate as generously as you can by sending in your check payable to the Dystonia Medical Research Foundation to the address below or by going online and make your donation online!

Dystonia Medical Research Foundation
Jen Devore Marathon
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601-1905

crowdrise.com/dmrfoundationnyc2013/fundraiser/jendevore/  

Now if all that isn’t reason enough to donate, I’ve come up with the top 10 reasons to donate!

Top 10 Reasons to sponsor Jen in the Boston Marathon

10. You can sleep in late on November 3 while still funding Dystonia research, while we are getting in to NYC early to work all day to help find a cure for Dystonia.

9. You can transform my sneakers into a money machine as we raise almost $100/mile.

8. Your donation is tax deductible.

7. If you sponsor us, Jen has no excuse to walk or to crawl and will run the entire 26.2 miles.

6. If we do not raise the total $2,500 we have to pay entry fee out of pocket, not including the shame and blech feeling we will get from coming up short!

5. The public can access comprehensive Dystonia information 24 hours a day, seven days a week,

through the DMRF’s web site (www.dystonia-foundation.org). During a time when so much health information is available through the internet, much of which should be viewed with caution, the Dystonia Medical Research Foundation is a dependable resource for accurate, unbiased information.

4. When I was in Alabama this summer, we weren’t sure if the Dystonia had taken away my dad’s full ability to walk again – but it didn’t! Help us celebrate that!!!

3. You can help us make it back to Montoursville, PA where we plan on celebrating the finish of the marathon! We plan to have chocolate - lots of chocolate, which will fuel those last few miles!

2. Jen will have gone through 896 oz. of Gator Aid, 43 Power Bars, 5 pairs of running shoes, a new pair of cross country skis (for winter training) 53 lbs of ice for my knees, 2 bottles of Alleve and all you need to do is send in a check payable to the Dystonia Medical Research Foundation. **some of this bullet point might be an exaggeration to get our point across - LOL**

1. The average diagnosis time for Dystonia patients is a few years! Help us raise awareness to decrease the time of diagnosis and to end the disorder! Let’s put the DMRF out of business by finding a cure!!!

Thanks to all of you for reading, for following my blog, for finding interest in my father's journey, but more importantly, for making even just a $5 donation! It means the world to me, my dad, and everyone else who can't run in the NY Marathon because of Dystonia.

with appreciation for you all!
Rebecca :)

sometimes we have to find our voice

There are those people that you always hear that have 'lost' their "Advocate voice" and we always tell ourselves, that we will never lose that and be that person. Sometimes, though, the exhaustion of doctor after doctor, opinion after opinion, failed treatment after failed treatment, the day comes when we realize that, we, too, have lost our "advocate voice."

Then what..... where do you go to find it.... where did you leave it..... and just exactly when did you lose it?

Well, this is where we have found ourselves.... and we have lost and have just re-found our voice. Sometimes things happen that you just know in your gut to be unfair, incorrect, or anything else and you just dig in your heels and find that fight that you lost! Well, there have been some things that have happened lately and we have come face to face with some difficult decisions to make and we are now digging our heels in! This week we will dig in, use our voice, and remember, that we are our best advocate for ourselves!

If you have lost your voice, ask someone to help you find it! Dig in, fight the good fight, and be your best advocate! Whether it is in regard to a different medication, to DBS, or even fighting an insurance company, dig in and persevere!

you win some... you lose some

Well, unfortunately, I am blogging today about news that was NOT what we were hoping for. The Baclofen Pump Lumbar Injection (test) was not successful.

"What does that mean?"

Well, the results were minimally positive. After 6 hours, dad's toes straightened out some and there was a few degrees bend in his left knee, but that was about it. When doing a Baclofen pump test, there must be a more significant 'positive result' than what he received to justify the inplanting of a pump.

"So, what does that mean!?"

We will head to UAB to visit with dad's neurologist in mid-August and have a serious discussion about DBS. The major concern right now for the DBS option is that getting relief in Dystonia patients that are only affected in their feet and legs with DBS is very unsure. We will see!

Until then, please continue to share your story, my dad's story, or just share what you know about this horrible disorder! Awareness is key and we are hoping for relief soon!

Progress is 100 steps forward and 90 steps back

Have you been there? Have you ever been in a place of progress in anything: school, relationships, building a house, painting a bathroom, etc. where you think you are doing GREAT and all of a sudden, 'something' happens that makes you regress? At that moment, either, you fail a test, have a huge argument, the contractor bails, the paint spills or anything else can happen and you think that all of your progress is just for naught.

Well, this is where we were with my dad a couple of weeks ago. We were making great strides with therapy, my dads strength and confidence were growing by the day, and we were setting goals and accomplishing them - until last Tuesday. Then, we had "a bad night". By this I mean we were up for hours with pain, spasms coming in at 3 a minute every minute, and there was no relief in sight. We finally got enough medication in him to stop the pain and spasms but in turn, it 'knocks him out' for about 5 days. Then we have to re-start the process of building strength again, we had cancelled therapy for the entire week and so we start over with all of that, etc. We all admitted we were in a position that our forward progress was hard to see when we were in the process of going backwards.

It is so difficult to watch and to have hope beyond explanation or even belief and then slide backwards so far that your hope is only a mere glimmer in the distance. We were doing great, building strength, and dad was gaining courage each day. We were making steps forward and had finally left the bedroom and made his way to the living room by way of wheelchair for the first time since mid-April. Then Tuesday happened.

We, remembered, though, that Dystonia is a monster that is not easily defeated, but defeatable, none-the-less. We backed up, allowed the Dystonia to calm down, allowed his body and brain to 'reset' over the course of a week, and then decided that we were NOT going to miss out, lay down, and be defeated. Instead, we grabbed the reins of this disorder and began to steer the ship again. The storm came and we got thrown off course, but we never lost sight of the destination - WALKING AGAIN! SO, what did we do, but on this Wednesday, dad took steps for the first time since mid-April, Thursday dad got IN the shower and had water run over him for the fist time since mid-April, Friday he walked to the living room and back for the first time since mid-April and he at dinner at the kitchen table for the first time since mid-April, Saturday dad sat on the couch for the first time since mid-April for almost 2 1/2 hours, and we will be keeping on.

Now, if you have Dystonia, you might find this post frustrating as you haven't had great progress soon and you are still sailing off course somewhere in the midst, but try not to lose the glimmer of hope! We are celebrating today as we never are promised tomorrow, and we are doing what we can to continue the strengthening and encouraging and, as of now, the Dystonia is cooperating. We will continue to fight, continue to strive, and continue to hope for better tomorrows!

YAY for the progress and we are celebrating, tonight, the end of a great week!!!

a rainbow in the sky

As I type this, I have just come inside from admiring the most beautiful rainbow I truly have ever seen! The colors in it were magnificent and the pure majesty of it was something that for a moment, took my breath away!

a sign of hope - 6/6/2013

A rainbow.... a sign of hope.... how appropriate for Dystonia Awareness Week in my life! We have had a pretty rough week with dad and during this week, I have seen so many signs of hope for this disorder and the future of the awareness of the disorder, I truly have hope! Back when my dad really took a significant turn for the worse with his Dystonia and began the process for DBS, I took a step as a personal promise and dedication and it has taken a turn for the better! Because of dying my hair blue, I have gotten such great response over it, I started a "Go Blue" movement on facebook. This movement has drawn people from all over the world to take a moment to wear something blue and to inform just one person about what Dystonia is! People have done everything from their hair to their toenails, to their clothing to wearing blue ribbons in honor of the thousands of people that suffer from this disorder!

Seeing the people that have joined together to make one big movement has been moving and beautiful! I am beyond grateful and honored of all the people "jumping on this bandwagon"! If we would and could all concentrate our efforts into one single movement and all in sync, what a difference we could make and what a mighty force we would be! We have started out in the right direction; let's finish this year strong; and let's make next year even bigger!

a couple of things....

So in this whole journey, I have decided that there are a few things that REALLY irritate me and I plan on helping see these two specific things to fruition - so stay tuned for the latest info on the progress made!

The first thing that really upsets me is that Dystonia is a quite common neurological disorder in the USA, is not recognized in any Microsoft program, software, etc. as being a word. Every time the word Dystonia is typed, the red squiggly line comes up under it and auto-correct tries to make it "Estonia" which is a state in Northern Europe!!!!! I mean, REALLY PEOPLE!?!? I am often asked, "Why don't you just add it to your dictionary" and the answer is simple - I shouldn't have to! Parkinson's Disease is recognized, Epilepsy is recognized, etc. So who does one write a letter to, get a petition signed for, and call and inquire about this being added? I'm not sure, but as soon as I find out, I will let you know!

Also, the other thing that I have found to be incredibly discouraging and sad is that Dystonia is not on the list in the USA for early Medicare. If you or a family member has Dystonia, you know and understand the EXTREME financial burden that quickly becomes one of your top concerns! This is something that we are blessed to have only heard stories of, that we are fortunate enough to have been able to avoid, but for most of the others, they are not so lucky. I have heard stories from everything from taking out second mortgages, bankruptcy, and even forgoing treatment and medication because they could not afford it. This is something that must be addressed. This is something that takes time. The Dystonia Medical Research Foundation, per some conversations I have had with the great people at the foundation, have started this process.

But these are things that we shouldn't allow to be in the first place. We should take every opportunity to make sure that everyone understands and knows what Dystonia is. We should remember that because we or someone we love suffers from this disorder that seems like nobody knows about, that it does not mean we are alone! There are many others who suffer from this. There are many others that understand the frustrations that come when the red squiggly line appears under the word "Dystonia" while you are typing. There are people who are in the middle of a financial strain from the results of living with Dystonia, that totally understand your financial struggles! We are all out there - together - in a great big world that on some days, seems very small when you find someone who says two of the most comforting words on the planet - "Me, too!"

Be the "Me, too!" to someone. Share Dystonia, and be on the look out for what is new on the front of these two items that I've shared about. Until then - Make a difference and Go Blue!

the ability in a disability

Well a few weeks ago my parents went through the craziness of making 2 of the three bathrooms handicap accessible for my dad. In doing this, they not only gave my dad the ability to take a shower on his own, but my mom the ability to not have to help him take a shower!

Now, let me clarify - this is not about my mom OR my dad, directly. This is about the freedom to move. My mother has no trouble or complaints helping my dad. She would do and still does everything in her power to help him without a single complain! And my dad is a trooper - doing everything that he can still do within his abilities - even if it takes him an hour to do a simple 10 minute task! They both are troopers in this situation! They are inspiration to me at how to honor your spouse and be there through 'sickness and health'.

But this is about a freedom that is so difficult to obtain for so many. To completely convert a bathroom into a handicap accessible bathroom isn't easy or cheap. This takes time, energy, and funds that so many people with disabilities might not have. The freedom to move is everything! Independence in your life helps keep you young, keep you functioning, keep you YOU! The one thing I have learned from this all is that a disability isn't always what keeps you in a wheelchair or housebound. But the way others treat you with your disability and the way you see yourself with a disability is what determines who you are through it all.

I have learned that I am not to treat my dad, or ANYONE with a disability as a disabled individual, but as an individual. I have also found that people with disabilities are the strongest people you will have met! They have overcome more obstacles than I can fathom and they can do much more than I can imagine! The next time you see someone with Dystonia, or any disability, do not treat them as disabled, but honor them in your actions towards them! There is a part of them that is strong and able in ways that you obviously cannot see!!!

Fear can help tell a great story!

Williamsport Sun-Gazette - April 9, 2013

I want to start this blog out by saying how proud I am of Karen Wright! What she did, allowing a photographer to take her picture and allowing a journalist to freely write an article about her Dystonia, is a scary thing that she forged through with bravery and class! I want to also, quickly, say my thanks to the Williamsport Sun-Gazette in not just writing an article about Dystonia, but for making it a bold, front page article, that will surely get some attention! Mike Reuther, the journalist who wrote the article, beautifully and accurately portrayed Dystonia in a simple and understandable light while still telling Karen's story and getting awareness out there for people who seemingly suffer alone with this disorder.

But the main reason for my writing this blog is to shed light to those who don't suffer, yet watch loved ones suffer, on the deep seeded fear that settles into so many of those who suffer with Dystonia. There is a fear that results from the multiple mis-diagnosis, insulting doctors, in-compassionate co-workers, un-educated medical personnel, and cruel public opinion of people who are 'different'. This fear is real and can be debilitating to those who allow it to settle into their hearts and minds. I think, too, that this fear is part of the reason that Dystonia is so vastly mis-understood or not known about at all!

BUT this fear is where those of us who are able and who have a love and passion for those who suffer should find ourselves called to defend and educate as many as we can on the disorder. They don't have to suffer alone or in silence or in shame, and we should encourage them to tell their story; we should hold their hand while they tell their story; we should encourage others to read their story; and, we should uplift them after telling their story, and encourage them to DO IT AGAIN!

Let us, also, though, remember to consider people with Dystonia with a compassion that, we who don't suffer, can't understand but yet muster up this compassion anyway. As often as we walk with these loved ones to the doctors offices, listening to diagnosis, hold their hands during treatments, and cry at the unfortunate nature of the disorder, we still do NOT know how they feel! I have no idea how my dad, Karen, Mrs. Daisy, Pamela, Carrie, and so many others that I have grown to appreciate, care for, and respect, feel! I have no idea what they are going through and what it is like to have the plethora of emotion that is churning around inside of them. But what I do know is this: I have been given an opportunity to help tell their story! I have been given the ability to be able to travel without pain, speak without difficulty, type without spasms, and live without Dystonia to be able to help the tell the story of Dystonia to the world!

Tell the story of Dystonia - even if it isn't your story - and help shed some light on this disorder and give confidence to those who suffer to tell their own story and help someone else!

what about 'them'

Well, let me start this by saying that I am absolutely not a counselor or a doctor - I'm just a self-employed graphic designer with a passion for people and a drive to help others! This is one of the main reasons that I have started this blog!

Don't get me wrong, there are lots of blogs out there for people dealing with this disorder: ones that I love to read, laugh with them in their adventures, cry with them when they feel like they've failed, and I've supported them in my comments and prayers for them! I hope, though, that my blog will bring light to another side of Dystonia that seems to be so quickly and easily overlooked - the side of the loved ones watching this disorder take over the body of someone they love dearly! For those of you with Dystonia, you have family and friends who are watching this and experiencing emotions, fears, frustrations, and stressers that you can't imagine just as we can't imagine walking in your shoes through this disorder.

So share this with them! Those who love you and want to support you - those spouses who want to know if it is ok to cry over you, those friends who want to know if it is ok to be mad that you are having to make this journey, those siblings who want to know if it is ok to get frustrated at your disability.

Dystonia is a disorder that affects all who are involved in some way. And there is support for every aspect of the disorder! If you are affected indirectly with this disorder or know someone who is, share this blog with them and tell them to subscribe to the blog or even reach out for more information on how to get support for them! We are all on this journey together!

Go Blue is making a new mark!

So some of you know and some of you don't yet, that my husband and I have dyed a lock of our hair blue in honor of my dad and his upcoming DBS as well as for all of those who suffer in silence about Dystonia. It is my intention, goal, and prayer, that through this simple act, I will be able to share what Dystonia is and hopefully plant a seed in someone else that will grow into a tree of knowledge that they can share with someone else and make a difference. Well who knew that this would turn into something beyond just a personal 'mission' of ours!?!?

I just recently moved to Pennsylvania from Alabama and have made many new friends but one of them stands out more than the rest! Her name is Karen and she has Dystonia! Karen, also, has an incredible sister named Kim, who does not have Dystonia, but together, they battle this disease for Karen. Well, when I dyed my hair blue, Kim thought that she knew a way that she could do more and she contacted the local newspaper! She not only contacted the local newspaper but she kept on insisting that they run a copy of my blog that explained my blue hair and Dystonia until she got a phone call. The phone call is where we were all beyond thrilled with her persistence and it paid off!!!

They were not considering running the blog but were considering and wanting to do an article for the Health section of the newspaper about Dystonia, and feature her sister and myself!

WOW!!!!! GO BLUE!!!!! Dystonia is a disorder that must be taken seriously and must be talked about and shared by us, because if not, who will? Well, next Thursday, Karen, Kim, and I am going to be interviewed and photographed for an article about Dystonia. Won't it be amazing at just how many more people will be informed and how awareness will spread by this? I am so excited and can't believe that my own personal mission of having people ask me "Why Blue" about my hair has turned into something much more!

Awesome...... just awesome!!!

For those of you who have not read my blog about "Why Blue" or the follow up blog "DBS, Here we come", please click the links and read them and share them with others!

where to begin...

Well, as I now ponder what to write about and where to even begin in this blog, I think to myself, "the beginning is usually the best place to start," and so there we will begin.

The journey of becoming a daughter of a Dystonia patient began for me back in approximately the beginning of 2006 - or somewhere in there. I had just gotten married and traveled back to visit my parents one weekend with my husband and we went for a golf outing with my dad. Well, that evening, my dad complained terribly about his hip being very 'tight' and even wondering if he had pulled a muscle in his leg. The next day, dad found it very difficult to walk. Well, time passed a little and I don't remember all the dates and time frames - I'm sure my parents or brother could remember a little better that me (I was a newly-wed, remember!?!?) - but the next vivid memory of mine was a trip back to see my parents and my brother and dad were putting a new tarp over dad's boat and they both came in nervously chuckling, but laughing none the less, about how dad had fallen and how weird it was! My brother said they were just standing there and all of a sudden dad went down like a falling tree - his entire body went stiff! Well, time continued to pass and the 'muscle cramps' got worse, his foot seemed to never not be cramped up, he even had a hard time getting shoes on because his foot was so cramped up. They did all the vitamin regimens, etc. and it just seemed weirder and weirder and then my dad got where he really needed a can for some stability to get around - his foot seemed to just 'give out' on him often! Well, in this time, many trips to dads family doctor seemed to be turning up nothing and he really didn't 'see' anything wrong with him, until the one day that the doctor was there and dad had one of his 'stiffening up and falling like a tree' episodes!

Well, that did it for the family doctor! He knew that something was terribly wrong the way it happened and immediately sent dad to find answers that he could't provide! And so began, as you hear so many other Dystonia patients talk about, the almost 9-month journey of neurologists, orthopedic doctors, chiropractors, and MORE neurologists to finally be diagnosed with a neurological disorder by the name of Dystonia. Our 9-month journey is a short jog down the road compared to some people who go years being mis-diagnosed, un-diagnosed, or just considered 'crazy'.

In our family, the joke is when a doctor tells you 'it's all in your head' - with Dystonia, it is!!! :) I know that there are many out there who have had these journeys that weren't as short as ours in my dad's diagnosis, and we find ourselves blessed to have been on that short end of the time for diagnosis, but those out there who have taken years to be diagnosed, or are still suffering without a diagnosis, it is time to make the #3 Neurological disorder in the nation become a common name!

Won't you help me spread the word about Dystonia!?!? Those of you who have strange symptoms of muscle spasms that are uncontrollable, muscle cramps that never end, or anything in the middle, ask your doctor about Dystonia! Are you one who knows what Dystonia is because it has drastically affected you or someone you love in a way that has changed your life forever? Help educate the general public and the medical profession by sharing a little blurb about your experience in hopes that they will one day recall the information and save someone from going through what you have been through!

Until next time and when I have the opportunity to share with you some fun information from my own personal "go blue" campaign, God bless you and yours and have a great night!!!

Rebecca

A new start

Well, I have so much to say on the topic of Dystonia, I have decided to create my own Dystonia blog to seperate it from my personal blog. I hope that you all join along for the ride and enjoy my comments as I discuss and ponder the disorder of Dystonia through the perspective of a daughter. I do not have Dystonia, myself, but my father does, and so I have taken this cause upon myself to further inform others about it and to advocate for those that have grown dear to my heart in this journey!

So journey along as I take on the cause of Dystonia Advocacy and enjoy all the laughter that is sure to follow me wherever I go!!!

**View my past few blogs about Dystonia and my Go Blue campaign here:
   ~ http://tonyandrebecca.blogspot.com/2013/02/why-blue.html
   ~ http://tonyandrebecca.blogspot.com/2013/03/dbs-here-we-come.html