Of Storms and Peace

Navigating this road called life

To Anyone who works in Emergency Medicine…

Whether you are an EMT, a Doctor, or Nurse, or anyone else who tirelessly works to help in emergency medical situations, I don’t know how you do it. I have friends and family who work in some of the same capacities as you, and I hear their stories. I don’t know how it’s humanly possible to still be smiling and gentle and kind by the end of your shift. THANK YOU for all you do for us. I really respect how hard you work and understand you put up with an awful lot. You see every type of true emergency and then have your time wasted with non emergencies… You deal with everything imaginable, and then, someone like me comes in. I have a movement disorder.

A few years ago I suddenly started having severe symptoms. I had lived with my disorder for years, but never in my life did it take over my entire body or become so violent. I was scared for my unborn child, not knowing what my body flipping around and contorting was doing to my baby, or if the contractions it triggered would cause me to go into premature labor. I felt betrayed and trapped by my body. It was doing things I certainly didn’t want it to do, and it wasn’t letting me do what I wanted to do. I couldn’t even open my eyes or speak during these events. My dystonic spasms were more severe than I’d ever knew was possible, the pain completely off the charts. The twisting of my torso made it hard to catch my breath. It was absolutely terrifying for my family to watch, and they called for help, on on more than one occasion.

I had polar opposite experiences with how I was treated. Each time my symptoms were the same, my family told all the same information. What medications I was taking, and how I could still hear and feel but couldn’t speak or open my eyes.

One of my early experiences was with an EMT who was convinced I was faking. I was handled roughly, the straps on the stretcher pulled so tight they hurt. Once I was taken far enough away from my family’s watchful eyes and ears he started yelling in my face asking me why I didn’t open my eyes and why I “refused” to speak to him. All I wanted to do was get help, and this man was making me wish I could escape and run away…

The next time I was scared to go, but the first responders begged me to. This time the EMT who was in charge of my care was the kindest most compassionate person I could have ever hoped to have. He loosened some of the straps to give my body the room it needed to spasm and twist around. When my breathing started to get rapid due to fear and pain he would speak quietly and calmly to me reassuring me help was here and I was going to get through this. He treated me with dignity and like a normal human being who was needing help….

I will never forget either experience. I will forever be grateful to the kind EMT and all he did for me. But it is the bad experience that has always been in the forefront of my mind whenever I yet again begin having severe symptoms… Even when my pain is at an unimaginable all time high, or my breathing is so severely compromised that it is scaring everyone around me, I still refuse to go to the hospital. I’m not sure I would get help anyway… In my past experiences I wasn’t given anything to help, nothing to calm my muscle spasms, nothing for the pain, not even a sip of water. If I wasn’t just left to lay there suffering alone for hours, then I was carefully being observed for faking, or tested for drug abuse, or having a psychiatrists doing their best to get me to confess that I was abused or at least totally overwhelmed with life. I’m afraid to ask for emergency help. And I’ve since discovered I’m not the only one.

There are enough heart wrenching stories to fill a book of people with all different kinds of movement disorders who’s regular meds aren’t keeping severe symptoms at bay who go to the emergency room desperately hoping for help and then have very bad experiences. Being left to suffer alone, restrained, handled roughly, ignored, yelled at, being sent to the psyche ward and more are common themes. All we want is help. Relief from the unrelenting torture that a movement disorder can inflict on our bodies. I wish there was standard protocol in place, like there is for epileptic seizures, to make it easier on you to help us. But I do understand that there are innumerable variables when it comes to symptoms and situations surrounding those of us with movement disorders which makes it so much more difficult.

There are a lot of things we have in common though. We long to be treated with kindness. We hope to be spoken directly to, and like an intelligent human being. Just like with seizures, we need to be kept comfortable in as safe a place as possible so we don’t hurt ourselves. Restraints at the very least make it all the more painful for us, and often, it only serves to make our spasms and tics worse. Involuntary movement is just that, involuntary. Not only can we not stop it, we are frustrated our body is out of our control. Dystonic spasms tend to get worse if they are resisted, if someone tries to force our body in a different position the pain can be unbearable.

If our condition is beyond what you are able to help with, we would so much rather hear a compassionate “I don’t know how to make it better I wish I could” than “Get over it, you are capable of going home if you wanted to”. We are frustrated and embarrassed enough with what our body is doing, it makes it all the more humiliating to realize that we are thought to be faking, or somehow doing it to ourselves for some reason.

I assume if you have read this far you are someone who cares. So very many of you who work in emergency medicine are angels dressed in scrubs. I’m so very glad you put up with what you do for the opportunity to help people in need. More often than not, if you are seeing someone with a movement disorder you are likely seeing us at our most vulnerable, painful, exhausting, frustrating, and desperate moments. Every kind word you speak and every gentle touch goes a long long way, and I thank you for that from the bottom of my heart!

Health Obsession?

With my debilitating disorder continuing to get progressively worse, there is always cause for concern. It is worrisome, there is no way around it. It changes one’s perspective when you are being robbed of being able to do things a little bit more each time it gets worse. I end up trying my hardest to enjoy what I can do “now” to the fullest, milk it for all it’s worth. Like going on vacation, I don’t know, but it might have been my last chance to go up there and so I treated it as if it were, soaking in the sights and smells and taking plenty of pictures in hopes it will stick with my memory for a long time…

These days, my dystonia never lets me have a break or forget it’s there.
I can’t just let go and live, and just lay my health issues aside, it’s ever present with each move I try to make to do anything. I have to carefully consider how each thing I hope to do will affect me, and weigh whether I’m going to be able to complete the task or if it’s worth the risk of big pay back later.

I get very frustrated when I am told “there’s nothing much we can do” by doctors, because, if they didn’t think it was “stress” they would have a whole list of prescription drugs for me to at least try, and maybe just maybe it would make life a little easier, maybe it would help slow the progression a little???

I’m not ready to give up hope that there is more we can do than just “manage stress” better. After all my careful research and digging into family history I finally at least got someone to believe my tic disorder was a separate issue from the dystonia and is genetic and not just caused by “stress”. I finally was given medication for it, and what a difference it made!!!  Yes, sometimes meds are good!

Don’t think I haven’t thought of or tried natural remedies… actually, for about 16 years that was my goal. I didn’t think it was worth the risk of side effects to take meds… I had too much of a personal and family history of reacting to meds even in strange ways. In fact I thought maybe it was a med that triggered the whole thing in the first place. A drug reaction certainly was the culprit for making me much much worse years later so I had good reason to be concerned. I leaned to work with and around my dystonia. I used special diets and supplements and specific exercises to try to keep things at bay. These all worked fairly well until they didn’t…my condition has progressed too far, I need more help. I need medications.

I’m not spending time trying to figure out what I have anymore. I know it’s dystonia, everyone agrees these are dystonic spasms… I have had an alternative specialist believe it is straight up dystonia not caused by stress, but I need a medical Dr licenced to prescribe medication to believe stress isn’t the only culprit so I can get the treatment I need. But because mine has been paroxysmal in nature (episodic) it’s easier to assume it’s stress induced. Should I just let it go and accept this is “it”? What if everyone else did that I wrote about in the post “Living Statistics”? They would be without the help they truly needed if they gave up…

And so, I am doing what I can to help out with spreading awareness and promoting the petition to make September Dystonia Awareness month…  at this point this feels like the best thing I can do to eventually get the help I need, better yet, it is helping others, even those who have yet to fall prey to this awful disorder… hopefully future generations of those with dystonia won’t have to go through what we went through to get help. This project gives me purpose and a sense that I can help others, even if I’m stuck in bed, and that inspires me and makes me happy.

Perhaps maybe I do sound obsessed with my health. But this is no small thing. It is ever present and becoming more and more debilitating. I can’t just pretend it will go away, I can’t just wait for it to get better anymore. My dystonia has completely taken over my life and I aim to fight back. To at the very least try to improve the quality of life that I have, for my sake and for the sake of my husband and children.

Please help all of us, if you haven’t signed the petition already please do, and please please share the link or some of these blog posts about dystonia to help spread awareness  and get the need for this petition out there!  Those of you who have signed and shared, thank you from the bottom of my weary heart. Every one who told their stories here thank you, and thousands more are ever so grateful!

Here is the link below:

http://wh.gov/lh5aj

Hodie’s Story

This is Hodie’s story. She fights against her body to do anything every day. Dystonia has not been gentle or kind to her at all. Please read and share her story…

How dystonia effects me. I am a 34 yr old lady, I assumed I had my my whole life ahead of me. But, the old saying is true you wanna make God laugh make plans…

I have shown small signs and symptoms of dystonia throughout my life. The facial twitching, spasms and jerks. Although, I always explained it away growing pains, nerves etc. and then I had an incident my blood pressure jumped to stroke level twice in two days so I made app with my GP. Who sent me to ER. By this time body was in full body convolutions. Wasn’t saw five hrs waiting sitting in wheel chair pushed in corner facing wall. I left went home that night ambulance picked me up bout midnight bp spiked convoluting, spasming, twitching and jerking. ER Dr said I don’t know whats going on but I can stop in. After was first dx on dystonia I was referred to neurologist.

Over course of yr same neuro dx me with every thing from psychogenic dystonia to Spinocerebeal atrophy. After six diagnosis, a clearing on psych evaluation, and second opinion, generalized torsion dystonia, pd & atrophy is current dx. My life now consists of getting up getting to chair. I can barely walk with aide of walker. Someone has to help and sometimes bath me. I contort like the exorcist of Emily Roads my feet like to go under my shoulders try to meet hips which leaves back arched head drawn back hands drawn. While in storm most of time my eyes shut I can not open them. My face makes weird grimaces then locks can not open, my vocal cords are effected its impossible to understand me. I can no longer drive I have tremors constantly. Head neck pulls. I can’t sleep for the constant strain on my body. My life is survival. I do not have the luxury of any thing more. Stress, lack of sleep makes worse but, I cant sleep so its a vicious cycle a roller coaster ride I cant exit.

I am begging you not for me but for the babies, children and my dystonic family please sign our petition. Like myself one day you, your mom, dad, child, sibling could wake up like I did. How would you handle it. 34 yrs old very active over night in debilitating condition remember you bend down, reach up, you may get stuck just like that. Could you handle it or watching someone you love suffer everyday the rest of there lives like this? We need your help by signing petition we raise awareness by raising awareness we get research with research possibly comes a cure. So please help me and my dystonia family. You can help us. Please tell all your friends. Dystonia don’t discriminate age, race, income level. It don’t care if you have a family, career, plans for a long healthy life. Once you have it all those things are second because now you live to survive another day, a few peaceful moments a small rest in a constant battle. So as I’ve said think of your life your spouses, kids ,parents, grandkids this could be you or them needing help. Thank you for listening to a very small part of my journey. Hugs and blessings to all. Thank you and God bless.

please click on the link below to sign!

https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz

Living Statistics

There are proper statistics already gathered about the average amount of time and numbers of doctors it takes to get a diagnosis with dystonia, but I thought it would be helpful to put names to the numbers and show just why we so desperately need change which can be brought on by awareness. I asked the Neuronauts support group to help me with this project… I was amazed with how many people responded right away, and so saddened by their stories… those who got a diagnosis right away are in a significant minority. Please read and share, this is eye opening! It is only a glimpse of what thousands of people have gone through. I don’t know how accurate my little survey is in the broad scheme of things, but have to say, even just in the people who responded, that is WAY too many people with way to many years and way to many doctors to finally get a real diagnosis!

Vickie: 6 years ,10 doctors

Juliet: 12 years…. 8 doctors

Carina: 2 1/2 years and 14 doctors in three different countries

Cathy: 14 years, 3 doctors

Rafik: 32 years 3 doctors

John: 18 years, 22 doctors

Rose: 21 years, 1 doctor

Susan: 11 Doctors, 15 years, 3 major hospital University

Michael: 5 years 4 doctors 5 hospitals 1 university

Angie: 6 months, 6 doctors, many hours on the Internet and it was me who figured out that I had Dystonia not any of the doctors I saw.

Stacy: 3 months,3 doctors

Lynne: One year n three doctors n had to change health plans to get the myobloc injections

Judy: It took me 30 years (that is not a typo), nine doctors, and countless trips to the ER, only to be thought of as a druggie by all of them but the last.

Lisa: 15 years, lost count of Doctors and searched the internet about my symptoms. I thought that I was suffering from stress and going crazy with anxiety! I was finally diagnosed in 2012

June: Initially in 1990 focal, 3 yrs 10 drs. After progessing 2005 & Generalized, 7 yrs 8 drs 3 MDS

Shari: 2 years, 6 doctors, finally diagnosed by a neurosurgeon

Allison: Four years & 8 doctors. Finally was directed by a friend to a Doctors web site & he had videos of people with my problem. Was diagnosed by him immediately.

Tiffany: 12 years and 1 Doctor. After being asked by many people if I had MS or Parkinson’s I went to my MD and he referred me to Neurologist who diagnosed me in first visit. Been an emotional roller coaster for me, and I know all of you too!!

Tania: Two years and seven doctors.

Joshua: 2 weeks 1 neuro

Pamela: 15 years 10 drs!

Lori: Think it was five docs altogether and about a year for me. My husband researched and found the diagnosis on the internet that led us to a neurologist…..finally. Would have been longer otherwise.

Treacy: 12 years and I’d guess 25 doctors

Catherine: 1 neurologist, 2 visits. He said essential tremor at first, changed to dystonia after he saw the bruised basil ganglia on the MRI.

Lori: 8 months for dysto dx, over 60-70 drs total, self dxd with DRD 5 years later.

Cece: had it since 1974, treated with valium for CD by family md. (cause unknown, just responded to valium) finally got a diagnosis of genetic torsion dystonia by movement disorder specialists in 2005. same treatment till 2010. it’s spread everywhere now. i had totally given up on drs. just a fluke i ever got a diagnosis.

Patsy: 35 yrs Numerous neurologists that dismissed it because they were more concerned with other issues, (recurring brain tumor). Then I seen a sweet lady neurologist who was caring and took the time with me and said there was help for me. She is my angel who sent me to a movement Dr. and now get botox.

Lisa: Over 12 years I think lost count, told it was RLS for years, then told it was epilepsy and treated me for that for years.total of 9 Drs to figure it out I’m 52 and finally know what it is…..FINALLLLY

Danielle: it took about 2 years and about 5 doctors before I happened to see a television show that was doing a feature on dystonia. As I watched the woman featured on the program, I immediately recognized her condition as being exactly what I have. So basically I diagnosed myself and began my journey to the neurologist office. That in itself took about another year and a half.

Genevieve: 3 general neurologist (nothing), 3 movement disorder neurologist (nothing), one geneticist (found the answer) diagnosed after one year with generalized dystonia.

Tonya: I was diagnosed on first visit. I feel so badly for those that suffer so long without a name of their disorder to research!

Susan: Saw 14 and it took 25 years.

Joanne: I was working on the onset began in summer 2006, my job role was manager in a car dealership. I started getting burning pains in my neck as i was cradling one of 3 lines in between my head and shoulder. throughout this time I was reading up on my symptoms and diagnosed my self with torticollis. so the moral of the story is u can teach ppl, learn ppl and educate professionals, just by describing and highlighting it to them. After all their not living the life we know individuals with dystonia, so we have to educate them.

Betty: I lived 35years with cervical dystonia. I was properly diagnosed approx. 15yrs ago. that is 50 years.

Emily: I’ve had dystonia for 15 1/2 years. Diagnosed 1 1/2 years ago. So took 14 years to get diagnosis. I saw 11 Drs

Alicia: Took 6 months and 5 doctors to get my 9 year old diagnosed.

Please, if you have not signed the petition yet, click on the link below. Now is the time to do it! We need it, those who have yet to be diagnosed need it even more!

https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz

Joshua’s Story

Here is Joshua’s story. Yes, there are men with dystonia too. He has proven himself time and time again to be an encouragement and a help to others who suffer with dystonia. In fact, he presently is co administrator of Neuronauts which happens to be the first face book support group for movement disorders that I ever joined all because of their efforts for dystonia awareness and a CNN article written about them last year. Through them I discovered I’m not alone. Through them I learned so much and have made friends with people who can understand as only one who goes through the same thing can. I have been encouraged watching how hard Joshua has been working this month to promote the dystonia awareness petition and all that he does to help keep our support group running smoothly.

Hello my name is Joshua. I’m 25 and have cervical dystonia (in my neck) and also tremors.

Anyways I grew up with a rough back round through my teen years. I have had many struggles with drugs violence etc and have worked very hard to overcome these hurdles.

At 20 I relocated to NM where I made a complete 180. I got into sales and learned to succeed with hard work and dedication. I finally came to a point in my life where I would consider myself on the right path making good money working hard and enjoying my friends and family.

Then one day I woke up with dystonia, the 3rd most common movement disorder in the world, next to essential tremors and Parkinson’s. Yet it is not so common as a lot of people have never heard of it. I was faced with yet another challenge in my life and I had 2 options, either go backwards in my fight, or keep on going. I chose to keep on going. So I now help with a group called neuronauts, a support group for people with movements disorders. I figured my love for people can be used in this area.

At the moment we are petitioning the White House to make September dystonia awareness month. Please help me in changing the next 25 and more years to come by making dystonia known the people in signing the petition! its much appreciated by many. With 2 mins of your time me and you can change the world for many.

If you haven’t already, please click on this link and sign the petition!!

https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz

Treacy’s Story

Here is Treacy’s story. I only met here a few weeks ago and it was because of her tireless efforts to promote the petition. I noticed on her twitter bio that she had paroxysmal dystonia and I thought, she sounds like me!! After seeing some of her videos I was even more convinced. She has worked so very hard to promote this petition we all need so badly. I am so glad she was willing to let me share her story!

Hi, my name is Treacy and I have generalized paroxysmal dystonia. My symptoms started when I was 16 with a tremor in my right hand. About a year later I started having dystonic storms. What is a dystonia storm? Picture a grand mal seizure. My hands curl, my feet curl, my head thrashes back and forth and right and left, my back arches, my stomach spasms, my eyes roll back in my head, the left side of my face twitches, my arms and legs flail, my eyelids close, my throat tightens. This often goes on for hours and the whole time I am completely aware of everything. I first time I told my doctor about these episodes, he said, and I quote, “I wouldn’t worry about it.” He did not run any tests, he didn’t give me any explanation for what might be causing it, he just said, I wouldn’t worry about it.

Twelve long years elapsed between the time my dystonia started and the time I was diagnosed. During those years I saw countless doctors. Some of them recognized something was seriously wrong but didn’t know what or how to help me, most of them though told me I must be faking. When the first doctor told me I was school phobic, I was sympathetic. I thought they must see a lot of people who are school phobic and simply made the wrong diagnosis. Then I researched school phobia and found symptoms disappear on the weekends and during the summer. I had seen this doctor in July. It was at that point I realized the doctor hadn’t made an honest mistake but rather had been unwilling to admit he didn’t know. This would be the first of many ridiculous diagnoses, including, I was upset I didn’t have a boyfriend, and I was upset I was an only child.

In fairness, my form of dystonia is very rare but, in the end, all it took to be diagnosed was a doctor who believed my symptoms were real and said I don’t know what this is so I am going to research it. We need more doctors like this! We also need more dystonia awareness because that truth of the matter is most people are diagnosed by a doctor who knows what dystonia is. We are currently petitioning the White House to officially recognize September as dystonia awareness month. Please help us in our efforts. We need 100,000 signatures by September 30th. It just takes 2 minutes to sign and verify. No one should have to wait years to be diagnosed.

Just click on the link below!

https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz

Hell on Earth

A dystonic storm can be hell on earth. I don’t use that description lightly, I literally mean a torture that goes on and on and on, makes one beg and plead for mercy and it still relentlessly continues… for hours.

I hesitated to share this story, believe it or not, as open as I am about my movement disorder on social media I don’t tell the half of what struggles I go through with it every day… It would be too much too often, I probably speak more about it than most would care to hear as it is… and sometimes, I just don’t want to talk about it. The story I’m about to tell is potentially disturbing, but I feel it must be told for the sake helping with awareness and promoting the cause of the much needed petition, we so desperately need thousands more signatures. And so today, I tell you about last night’s hell on earth…

My evening started out like normal, I told the girls goodnight and then went and laid down on the floor by my toddler’s bed in his room to keep him company while he drifted off to sleep. I had my tablet with me for my usual evening entertainment while I waited. The only thing out of the ordinary was the fatal fact that I failed to bring my phone with me.

My toddler fell asleep. I was finishing up what I was doing on the tablet when my husband went to bed… without checking in on me, which also is not a normal thing. If he had, I would have asked for help getting up because spasms were starting to really bother me and make my legs not function well. In fact, it began to dawn on me that the twisting spasms were more than just being uncomfortable, I couldn’t get up no matter how badly I wanted to.

I didn’t want to holler for help and wake my son, but then discovered it had already taken over my voice anyways. I had to think fast, I knew I only had a few minutes before my hands would be twisted up in painful contortions and useless to help me. At least I had my tablet. I didn’t want to cause a panic posting in my support group to ask for help, so decided to send a private message. The first friend I checked with was online and she was only too glad to send my husband a text telling him I needed his help. Problem is, either his phone was off or he didn’t have it with him. While he blissfully drifted off to sleep I lay in the next room locked in twisted agonizing pain. Any effort to move or speak sent me into a tailspin of shaking and more spasms, I just prayed I wouldn’t hit my head on the desk or my toddler’s bed.

This went on for several hours. I would doze off only to be awakened again with the pain of my twisted body, laying on the floor didn’t help the pain either, but at least I had a pillow. I hadn’t taken my evening meds, I had to go to the bathroom, and I was so longing for my own bed! It kept getting worse and the pain and exhaustion was overpowering. There was no more dozing off, I was wide awake and absolutely miserable. I eventually worked up the strength to drag myself along on my belly with the use of one elbow. Each inch forward was an exhausting agonizing feat. I was breathing hard and tears mingled with my sighs.

I eventually made it to the side of my bed and managed to reach up and bang on the side of the mattress. What a relief to hear the bed creak as my husband stirred and woke up. He came around and stubbed his toes on my strewn out twisted body. He crouched down and rubbed my back and gently asked how he could help. I broke down and sobbed.

Up until then it had been hell on earth, the rest was difficult, but so tender and touching too… He got a tissues to dry my tears, somehow helped me to the bathroom, since my hands were clinched fists he put my pills in my mouth and gave me sips of water to get them down. He dressed me into my pajamas, helped me into bed, and then, when I thought we were done, he remember I always have to put lip balm on before I sleep and got it out and gently spread it on my lips. I couldn’t talk well or much, so he had no idea just how long I had been suffering, but he was there now and did everything in his power to take care of me and make sure I was comfortable.

Bed never felt so good… I was finally able to drift off as my meds began to kick in and get some much needed sleep. This morning I certainly am feeling the after affects, and I told my husband how long I had been suffering alone and he apologized again. Another good reminder to always have our phones with us, and for him to always check on me.

I’m not the only one who goes through this level of pain and frustration with dystonia, there are many others who experience storms and especially bad spasms. It’s not pretty, and it can be hell on earth.

Please, if you haven’t yet, please please click on this link sign the petition to make Sept nationally recognized as dystonia awareness month. We need this, we need it for better treatments and hopefully someday for a cure. And once you do, please share it, we can’t do this without your help!

https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz

Madeline’s Story

Today’s story is from my mother in laws perspective. We knew my health wasn’t perfect when we got married, but no one knew just how bad it would get over the years. This has been tough on them too! Thanks for all you do! We love you!

Dystonia is a horrible disorder that shakes up and changes the lives of EVERYONE involved.
 As a mother-in-law, who likes to “fix” things, it makes me feel so helpless and sad.  (Taking meals, babysitting and driving someone to appointments just doesn’t seem like enough sometimes.)   It is such an emotional struggle to watch my son’s family have so many dreams dashed due to this cruel handicapping problem.  A medical problem that most professionals seem to ignore and write off with a label before really looking into it or studying up on it.

It is so painful to watch your precious, talented daughter-in-law not be able to do the things she loves, let alone the things she wants to do as a wife and mother.   It’s difficult to see our son’s life have increased responsibilities/duties even though he willingly does what needs to be done at home as well as hold down a full time job.

Please sign the petition ASAP and help the process of bringing awareness of dystonia to professionals and the nation,  eventually working toward a cure.   Do it now!!   Thanks so much!

Here is the link directly to the petition, it only takes a few minutes to sign and confirm your email!

https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz

Michele’s Story

Here is another story from a family member’s perspective. This time it’s from my own mother. This piece was given to me as a lovingly handwritten note… Before I share it I first want to say “thank you” to all of the mothers who do all they can to help, and struggle through watching their children suffer, no matter how young or old. We appreciate you!! And especially, Thank you mom. I love you!

I’m Holly’s Mom. Her dystonia came into our lives with “curses” and “blessings” so intertwined that it is impossible for me to separate the two.

Some of the “curses” have been the agonizing distress of seeing her incredible pain, not always being able to breathe, talk, or see during the twisted torments of a storm. When she opts to crawl to the bathroom because it is easier than pulling herself into the wheelchair and maneuvering it into that tight space, I see that as a “curse”.

The “blessings” are the hilarious moments, the tender moments, and the times of closeness we would be denied without her dystonia. For that I am very thankful.

It is my hope that in making others more aware of dystonia hat the “blessings” will far outweigh the “curses” in her life and others who have this disorder.

If you haven’t yet, please sign the petition to officially make September dystonia awareness month in America!

https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz

Stacey’s Story

This story is from a different perspective, it’s written by my very own sister Stacey… dystonia doesn’t just affect the person who has it, it hurts our loved ones too!! Thank you Stacey for all you do for me! I love you!!!

Dystonia. I’d never heard the word before. But over the last several years, I have seen what it has done to my sister. We are very close and it is hard to watch her suffer through it’s “storms”. We know each other so well that often we can communicate with just a look, but when she is really bad, her eyes are closed along with being unable to speak, leaving no way to communicate, no way to let me know what her needs are, and my heart breaks.

I am over at her house every morning except weekends, to help with the kids and to be there for her if she has a bad spell. Some days are good. But life hasn’t gone the way we’d thought. In the past she would play the violin while I played the piano, sharing our music with others. Due to the unpredictable nature of Dystonia, we rarely play together, and much less perform for others. I don’t know if we will ever be able to play in public again.

It is my desire that Dystonia would become more widely known and understood and that those who have it would be treated with more understanding and respect. From what I’ve seen and heard, it varies greatly from one individual to another and doesn’t always fit in the “boxes”. If you haven’t already, please add your signature to the petition to make September “Dystonia Awareness Month” nationally. Thank You!

Here is the link to the petition, please sign it and share!

https://petitions.whitehouse.gov/petition/promote-dystonia-awareness-recognizing-dystonia-awareness-month-september/2S9jBCVz

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