though Dystonia is not the Diagnosis, awareness is SO important

So I have been extremely quiet on here lately as there have been some major developments with my dads condition along with me having had a sweet baby boy. We were blessed to welcome Timothy Stephens Sharp to our family on July 14th and have been adjusting to life with two boys. Also, school has started around here and with that comes all the activities from choir to soccer, not to mention school itself. Things have been quite nutty and learning to balance it all has been quite an adjustment but one that has been rewarding and fun all the same while.

Now, I'm sure you are wondering about the title of this blog and what on earth it means. Lately, my dad has sought a second opinion on his Dystonia and was starting the process of DBS (Deep Brain Stimulation) surgery and had changed doctors and was seeing Dr. Mahlon Delong of Emory University. Dr. Delong is the Scientific Director for the Dystonia Medical Research Foundation and along with many accolades, comes highly recommended and is quite qualified to treat any and all forms of Dystonia. He is a wonderful person with a kind heart and one that seeks to hear his patients all while making the best diagnosis he could. All of this to say, my dad has been seeing Dr. Delong for almost a year now on a consistent basis and Dr. Delong filmed my dad and went through all of the diagnostic tools needed to qualify dad for the DBS. He took dad's case and films before the board that cofirms these cases and gives the 'go ahead' for surgery and there wasn't a consensus on dad's case that it could be Dystonia. Some of the people on the board questioned another disorder and wanted a simple blood test along with another clinical test run to rule out 'one last thing' before they gave the green light for the DBS surgery. Well, after a few very anxious weeks of waiting on test results, the test came back that dad does NOT, in fact, have Dystonia, as we have believed for the last 7 years. He has was is called Stiff Person Syndrome (SPS). According to HopkinsMedicine.org, "Stiff Person Syndrome (SPS) is a rare disease of the nervous system. Progressively severe muscle stiffness typically develops in the spine and lower extremities; often beginning very subtly during a period of emotional stress. Most patients experience painful episodic muscle spasms that are triggered by sudden stimuli." This diagnosis caught us so incredibly off guard. We have settled amongst ourselves the diagnosis of Dystonia and have poured ourselves into the lives of a Dystonic world. We have educated ourselves and others on this terrible disorder and have dedicated extreme amounts of time and energy into raising funds and awareness for research on this disorder. 

All of this has NOT been in vain! Had we not taken the series of steps over the last 7 years to end us up where we were, we would still not have the correct diagnosis. Also, had we not taken these steps, our lives would be less fulfilled because we would lack the friendships and relationships with some of the most incredible people and some of the bravest people we have ever met. We are grateful to still say that we will PROUDLY still advocate for all of our Dystonia friends each and every day. Tony is still excitedly running in the New York Marathon in honor of each and every person affected by Dystonia, I plan on still participating in Dystonia Advocacy Day on Capital Hill next year, and we feel even stronger about the needed awareness and education for Dystonia. It is commonly heard by Dystonia patients about how many years and how many wrong diagnoses they received before they received the correct diagnosis of Dystonia and how people need to know what it is more so that it can be better diagnosed. We are, now, personally aware of the need for knowledge and better diagnostic abilities and education on Dystonia so that Dystonia is so well known, that other disorders aren't misdiagnosed as being Dystonia. 

Please bear with us as we all adjust our course, but PLEASE don't forget to educate yourself and someone else each day about Dystonia. The fight is real, the lack of knowledge is immense, and the need for a cure and better understanding is great!

Please visit http://wh.gov/lh5aj and sign the petition to recognize September as Dystonia Awareness Month. Also, if you feel so led, please make a donation to the DMRF for Tony's marathon fund at www.dystonia-foundation.org/tonysharp. 

Bless you all and more to come soon!

-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!