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!
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