So many of you reading this are affected in some way by dystonia. Many of you have dystonia and there are so many others of you that are reading this that do not have dystonia, but love and care greatly for someone who has dystonia.
There is no question that dystonia creates in most affected persons a disability that prevents them from living live in a 'normal' way. This 'normal' by our society includes walking without assistance, climbing stairs with ease, eating or using your upper extremities without rapid and involuntary movement, as well as speaking clearly and with distinction. These 'normalcies' are often times handicapped when dystonia enters the picture of the affected. These 'simple tasks' are then met with difficulty, or even impossibility. Every day life is completely altered to fit into the 'mold' of what each individuals' dystonia looks like and affects. A new life enters the picture and adjustments are made accordingly. The 'dystonic world' has taken on a new member.
What, though, about the family members? To live with, love, support, care for, and be involved in the life of someone who has dystonia is to take on the disorder as your own, in a way. Your restaurant choices are affected by handicap accessibility. Your movie going experience is limited to an almost empty theatre so that they can have the freedom to get up and walk around when their spasms begin or a miserable front row experience because they can't climb the stairs to the 'ideal' middle row. Your grocery store trip takes twice as long because you are respectful of the fact that their head won't turn to both sides, and therefore you must walk up and down each aisle twice to see both sides. Your phone conversations are no more as their voice just won't work and so your out of town trips are supplemented by texting and skype/Facetime when it is available.
(*This post is by no means to take away from or undermine the severity and reality of the dystonic individual but to open those who don't understand's eyes to a perspective that is so often missed and discredited.*)
The individual who loves another with dystonia is all of a sudden stricken by a 'disability' that they never expected. Disability holds a different viewpoint from the wife who finds herself checking the handicap accessibility of a new restaurant she visited with a friend and realizes that she can't ever go on a date to this great 'new find.' The best friend finds himself finding a new hobby because golf is no longer a sport they can play on vacation anymore. The grandchild never knows what it is like to get a voicemail from his favorite "Gram" on his birthday while he is in school, or what it is like for his "Pap" to travel to watch him play in his t-ball game.
Disability affects everyone involved and those who think it only affects the disabled, is poorly mistaken. Take the time to recognize that disability is a 'status' that is taken on by more than the individual who is affected by dystonia and other disabling disorders. "Disability" is all inclusive.
Tuesday, August 11, 2015
Thursday, August 6, 2015
... what we all have in common
So I've been pondering this whole "dystonia daughter" title to my blog and this has stirred up so many emotions. This all started by my dad being diagnosed with Dystonia in 2008. That diagnosis changed about a year ago and switched his diagnosis to an even more rare neuro disorder. This change in diagnosis began a dialogue among myself and so many others that I passionately care for and love of "Why are you still interested in Dystonia when you dad no longer has it?" -mercy..... what a great question!
What, though, does he have that everyone else in the "Dystonia boat" or any other rare disorder/neurological disorder boat can relate to? What does every one of these people and disorders have in common? The answer is that they are ALL people that are braver than I in some ways and are living each day in search of an easier way and an easier day. To suffer and struggle to move and to do 'simple, every day' tasks is a battle that millions of people suffer with each day!
What else these people that struggle with Dystonia and other disorders is passion and hope! The hope that comes from hearing about new research being done to find a cure, the hope that comes from the federal government dedicating funds from the NIH to expert research, and the hope that comes from having friends and family that stand alongside them to walk this road that they are on is a hope we all should strive to find. This hope is what gets them through the tough days. These friends and family are the ones that sit in the floor and cry with them, rejoice with them when they reach a medical milestone, and that advocate for them on Capital Hill when their bodies won't allow them the opportunity to travel and talk with their congressmen/women themselves.
When it really boils down to it, dystonia and my dad have everything in common but a diagnosis and treatment. Everything else is left unchanged! From the difficulties to do every day tasks to the beautiful friendships and relationships formed along the way, things remain unchanged for dad. Stay strong, remember, that you are not alone, and keep fighting the good fight!
"Alone we can accomplish many great things. Together we can change the world!" -Estafania Guadalupe Estrada
What, though, does he have that everyone else in the "Dystonia boat" or any other rare disorder/neurological disorder boat can relate to? What does every one of these people and disorders have in common? The answer is that they are ALL people that are braver than I in some ways and are living each day in search of an easier way and an easier day. To suffer and struggle to move and to do 'simple, every day' tasks is a battle that millions of people suffer with each day!
What else these people that struggle with Dystonia and other disorders is passion and hope! The hope that comes from hearing about new research being done to find a cure, the hope that comes from the federal government dedicating funds from the NIH to expert research, and the hope that comes from having friends and family that stand alongside them to walk this road that they are on is a hope we all should strive to find. This hope is what gets them through the tough days. These friends and family are the ones that sit in the floor and cry with them, rejoice with them when they reach a medical milestone, and that advocate for them on Capital Hill when their bodies won't allow them the opportunity to travel and talk with their congressmen/women themselves.
When it really boils down to it, dystonia and my dad have everything in common but a diagnosis and treatment. Everything else is left unchanged! From the difficulties to do every day tasks to the beautiful friendships and relationships formed along the way, things remain unchanged for dad. Stay strong, remember, that you are not alone, and keep fighting the good fight!
"Alone we can accomplish many great things. Together we can change the world!" -Estafania Guadalupe Estrada
Monday, August 3, 2015
... to know a little more about Dystonia
What would it mean to know just a little more about dystonia to you? Do you even know what dystonia is? If you don't, I ask that you take an extra few minutes and find out, but if you do know what Dystonia is, what would it mean to know just a little bit more? What would it mean for the doctors to know a little bit more? What would it mean for physical therapists, speech therapists, chiropractors, massage therapists, psychologists, and others within the medical community to know a little more about dystonia? ....... I'm not sure, actually.
For me, though, to know a little more about dystonia would mean an 8-year change of events. 8 years ago, my dad was diagnosed with dystonia, and I knew nothing about it. It seems, now, though, that I know a LOT about it... but not enough. All of the information I have now about dystonia is great toward educating those who know nothing about it. It is great for sharing with congressmen and congresswomen about how helpful funding and awareness in higher up decision making powers that may be. It is great for supporting someone who has just received a diagnosis or has a family member that has just received a diagnosis of dystonia. Where does this plethora of knowledge leave me, though? It left me still sitting through 8 years of a misdiagnosis of my dad. All of this knowledge let me sit in Alabama for 4 months while my husband was living 'our new life' in Pennsylvania by himself. It left me to help situate many different medical trips, ER visits, house remodeling to better suit him, and supporting my mom, in a situation that seemed utterly hopeless and helpless. The phrase "knowledge is power" is often attributed to Francis Bacon from his Meditationes Sacrae in 1597 and I agree with Mr. Bacon completely. I do think, though, that there should be a footnote that says, "your knowledge can sometimes lead you astray"! All of the knowledge I have and had about dystonia pointed in the direction of -imagine that- dystonia! All of the understanding and teaching that the physicians had that were treating my dad for dystonia had pointed in the direction of -imagine that- dystonia.
Dystonia, though, was the wrong diagnosis.
We lived dystonia for 8 years and lived it falsely. The knowledge we had and the knowledge the doctors had were not enough. We can never know enough and we can be sure that there is always something else to learn. The knowledge in the dystonia community and the support and friends we made during those 8 years WERE enough! They were enough to walk with us in the dark days and give us hope in what seemed like our darkest hours! Why, then, do I still walk with and stand with those in the dystonia community when they don't know enough? Because helping them know more, learn more, and continue to learn and find a cure, will spare those others who think they know enough, from walking 8 years of a misdiagnosis!
For me, though, to know a little more about dystonia would mean an 8-year change of events. 8 years ago, my dad was diagnosed with dystonia, and I knew nothing about it. It seems, now, though, that I know a LOT about it... but not enough. All of the information I have now about dystonia is great toward educating those who know nothing about it. It is great for sharing with congressmen and congresswomen about how helpful funding and awareness in higher up decision making powers that may be. It is great for supporting someone who has just received a diagnosis or has a family member that has just received a diagnosis of dystonia. Where does this plethora of knowledge leave me, though? It left me still sitting through 8 years of a misdiagnosis of my dad. All of this knowledge let me sit in Alabama for 4 months while my husband was living 'our new life' in Pennsylvania by himself. It left me to help situate many different medical trips, ER visits, house remodeling to better suit him, and supporting my mom, in a situation that seemed utterly hopeless and helpless. The phrase "knowledge is power" is often attributed to Francis Bacon from his Meditationes Sacrae in 1597 and I agree with Mr. Bacon completely. I do think, though, that there should be a footnote that says, "your knowledge can sometimes lead you astray"! All of the knowledge I have and had about dystonia pointed in the direction of -imagine that- dystonia! All of the understanding and teaching that the physicians had that were treating my dad for dystonia had pointed in the direction of -imagine that- dystonia.
Dystonia, though, was the wrong diagnosis.
We lived dystonia for 8 years and lived it falsely. The knowledge we had and the knowledge the doctors had were not enough. We can never know enough and we can be sure that there is always something else to learn. The knowledge in the dystonia community and the support and friends we made during those 8 years WERE enough! They were enough to walk with us in the dark days and give us hope in what seemed like our darkest hours! Why, then, do I still walk with and stand with those in the dystonia community when they don't know enough? Because helping them know more, learn more, and continue to learn and find a cure, will spare those others who think they know enough, from walking 8 years of a misdiagnosis!
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!
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!
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