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!
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
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
Monday, June 23, 2014
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
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
Monday, May 12, 2014
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
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
Tuesday, March 25, 2014
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
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
Thursday, January 23, 2014
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!
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!
Friday, December 13, 2013
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
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
Sunday, October 27, 2013
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!
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!
Saturday, October 5, 2013
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!
"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!
Tuesday, September 10, 2013
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
Jen Devore Marathon
One East Wacker Drive, Suite 2810
Chicago, Illinois 60601-1905
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 :)
Rebecca :)
Thursday, August 29, 2013
So much has happened
Well as you know with medical diagnosis, things happen as slow as Christmas or happen so fast you are left with your head spinning and trying relentlessly to stay caught up. Well, we have had so many things happen so quickly and we are pleased with them all. The Baclofen pump trial injection did not go as we hoped or expected and we have since re-visited that and will be doing that again with a real clear understanding of all individuals involved of what to expect. Also, we have since been able to see dad's neurologist and he is well pleased with moving forward with trying the Baclofen pump again. A few weeks ago, i was able to return to my home in Pennsylvania and leave mom and dad in a wonderful place to be able to begin their new 'normal'. They have since made a trip (3 1/2 hours one way) to Birmingham on their own and it was incredibly successful. They were able to figure out how to pack the car, travel that far, get out and stretch and do all of those things on their own. I knew they could do it, but i think their confidence was a little shaky before - but now it is great confidence in their own abilities.
In other news.... lol.... we have had a friend secure a spot in the ING NY Marathon to run on behalf of the Dystonia Medical Research Foundation in honor of my dad and all others who can't run! Her name is Jen Devore and the NY Marathon requires each individual running on behalf of a foundation to raise $2500 dollars for that charity. Please consider making a donation to this incredible feat for Jen to do for people she doesn't even know! Here is the website:
In other news.... lol.... we have had a friend secure a spot in the ING NY Marathon to run on behalf of the Dystonia Medical Research Foundation in honor of my dad and all others who can't run! Her name is Jen Devore and the NY Marathon requires each individual running on behalf of a foundation to raise $2500 dollars for that charity. Please consider making a donation to this incredible feat for Jen to do for people she doesn't even know! Here is the website:
Fun info and look for updates soon about the marathon. Until then, keep your head up, press on toward the goal, and always be your own best advocate! Spread the word about Dystonia every day to someone and let's win the battle against lack of knowledge or education about what Dystonia is!
Sunday, August 11, 2013
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!
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!
Thursday, July 25, 2013
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!
"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!
Thursday, July 11, 2013
change of plans and hope is in the air!
Well to spare you all the details that discredit certain individuals, I will just jump to the body of this blog. We have had a slight detour on our journey. The new decision now is to do a Baclofen Pump Test Injection to try and help with the spasticity that my dad experiences. His Dystonia is slightly different from 'typical' (though no 2 cases are alike) Dystonia. He experiences more muscle spasms than constant and continual contractions. Dad's legs aren't always drawn unless he is in the middle of a Dystonic Storm. Even during the storms, there seems to be periods of relief, and then the muscles will spasm, creating excruciating pain. It is still quite concentrated in his lower extremeties and only during extreme spasms does it go up into the extreme lower back area. Because of this spasticity, we all have great hope for the pump to relieve that.
"What is a Baclofen Pump?" and "What does it do?" you ask! Well, what great questions! ~*disclaimer - i am not medically trained, but speak 'simple English' and try to explain procedures and equipment how it makes sense to me*~ The best way i know how to describe this is to compare it to a combination of an insulin pump (for a diabetic) and an epidural. The Baclofen pump, like an insulin pump, is permanently inserted into your body and continually 'pumps' or drips the medication Baclofen in to the lower lumbar of the spine as an epidural.
Now, my very next question was and from others usually is, how will a pump into the spinal column help correct a neurological disorder that takes place in the brain? Again, very good question! Go on a journey with me through the 'misfiring' of Dystonia. In our brain, we create millions of signals a minute that travel from our brain, down our spinal cord, exit the spinal cord at the nerves, and the nerves send the message to our muscles to actually DO something. When an individual is suffering from Dystonia, the brain, itself, is misfiring, therefore sending bogus messages to the muscles to contract or spasm at infrequent and spontaneous times creating spastic movements or permanently drawn or 'cramped' muscles that never release or relax. When one takes botox injections (my dad took these for years), it essentially turns the muscles off that are receiving the wrong signals, disallowing them to cramp or contract or even spasm as the brain is incorrectly telling them to. After a while, though, the effects of Botox can no longer be effective in certain individuals.
Typically, the next step if you have more spasticity to your Dystonia is a Baclofen Pump. What this does, is the medication Baclofen (a medication that is used to treat spasticity) is constantly 'dripped' into the spinal column at the specific vertebrate that the affected nerves are at. So as in my dad's case, the baclofen will be placed in the lower lumbar where the nerves that send signals to the legs exits the spine. When this medication is dripped onto those nerves, in a similar way that Botox works, the bogus signals that are sent to the legs will be neutralized, not allowing the signal to go to the muscles telling them to contract erratically. They permanently attach the tubing to the spine and the pump is inserted into a fatty region, usually in the left or right lower abdomen.
Now as in everything with Dystonia, nothing is the same, alike, 'typical', etc. so we are actually unsure if this will even work. So on the 23rd of this month, we go for a 'test shot' (my terminology - not a medical term!!!) where they just do a single injection into the spinal cord and you lay there flat for about 3 hours and hope, AND PRAY that results show up. This is a procedure that immediate - or fairly quick - results are seen - so we will know that day within a few hours if this will be an answer for my dad - you will all know soon!!! FINGERS CROSSED, PRAYERS LIFTED UP, and HOPE IS IN THE AIR!!!!!!!!!! My dad is claiming Psalm 121:1-2 "I lift up my eyes to the mountains - where does my help come from? My help comes from the Lord, the Maker of heaven and earth."
"What is a Baclofen Pump?" and "What does it do?" you ask! Well, what great questions! ~*disclaimer - i am not medically trained, but speak 'simple English' and try to explain procedures and equipment how it makes sense to me*~ The best way i know how to describe this is to compare it to a combination of an insulin pump (for a diabetic) and an epidural. The Baclofen pump, like an insulin pump, is permanently inserted into your body and continually 'pumps' or drips the medication Baclofen in to the lower lumbar of the spine as an epidural.
 |
| baclofen pump diagram I found on internet |
Typically, the next step if you have more spasticity to your Dystonia is a Baclofen Pump. What this does, is the medication Baclofen (a medication that is used to treat spasticity) is constantly 'dripped' into the spinal column at the specific vertebrate that the affected nerves are at. So as in my dad's case, the baclofen will be placed in the lower lumbar where the nerves that send signals to the legs exits the spine. When this medication is dripped onto those nerves, in a similar way that Botox works, the bogus signals that are sent to the legs will be neutralized, not allowing the signal to go to the muscles telling them to contract erratically. They permanently attach the tubing to the spine and the pump is inserted into a fatty region, usually in the left or right lower abdomen.
Now as in everything with Dystonia, nothing is the same, alike, 'typical', etc. so we are actually unsure if this will even work. So on the 23rd of this month, we go for a 'test shot' (my terminology - not a medical term!!!) where they just do a single injection into the spinal cord and you lay there flat for about 3 hours and hope, AND PRAY that results show up. This is a procedure that immediate - or fairly quick - results are seen - so we will know that day within a few hours if this will be an answer for my dad - you will all know soon!!! FINGERS CROSSED, PRAYERS LIFTED UP, and HOPE IS IN THE AIR!!!!!!!!!! My dad is claiming Psalm 121:1-2 "I lift up my eyes to the mountains - where does my help come from? My help comes from the Lord, the Maker of heaven and earth."
Saturday, June 15, 2013
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!!!
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!!!
Thursday, June 6, 2013
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 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!
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| a sign of hope - 6/6/2013 |
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!
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