Thursday, July 30, 2015

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

Saturday, April 18, 2015

Dystonia Advocacy Day 2015

I was honored this year to attend the Dystonia Advocacy Network's Dystonia Advocacy Day yesterday on Capital Hill. I joined 100+ other advocated and proceeded to share my dad's Dystonia story and ask congress to help us in the fight for research funds. What a great day and what beautiful weather we had! I was able to traipse all over Capital Hill with Stephens attached and made a huge impact on congress. We were able to celebrate the passing of the SGR as well as thank them for their continued efforts with the DOD acceptance as well as ask, along with so many other activists to increase the NIH budget to $32 billion. Thanks, again, to the Dystonia Advocacy Network and all the groups associated with the DAN to make this opportunity for myself and other Dystonia advocates possible.

Now, I would like to take this time to remind you all, too, of the group of runners we have running the NY marathon in November. We are in the process of raising $25,000 for the DMRF and need your help. If you would so kindly print the flyer, post it at your work, share it with your friends, and consider donating yourself, we would all so greatly appreciate it. I also know that the more than 300,000 people in North America who suffer with Dystonia would appreciate it, as well! Bless you all and thanks for everything!


Tuesday, September 16, 2014

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