White Matter Brain Disorder

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White Matter Brain Disorder
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    Community Voices

    I’m due for my annual 2-3 fun hours on the MRI table for two spine and one brain scan LOL.

    I was wondering if anyone has had an MRI that measures white/grey matter and whether that was helpful in understanding your MS and/or related conditions (e.g. fatigue, depression, mood swings, memory/cognitive).

    Thank you!

    3 people are talking about this
    Community Voices
    Community Voices
    Community Voices

    I was diagnosed with this disorder about a year ago with an MRI. I have been having memory, thinking, and organising problems for years but didn’t know why. I have had several falls, the most serious on Halloween last year where I fractured my sacrum falling down the stairs. Since then I had unrated eye surgery with complications so I haven’t driven on 3 months. I have taken a leave from my volunteer position at an animal shelter and am fearful of returning because of my issues. I also have been clinically depressed for 40 years. Is there anyone out there that can identify with mybsitmy

    4 people are talking about this
    Community Voices

    Please, how do I post a “check on me”?

    I’m in constant pain from fibromyalgia arthritis and multiple ruptures in my c spine, thoracic and lumbar spine. I have BPD. No one will give pain meds except otc’s that I can’t take because of irritable bowel. I’m nearly home bound and I’m too young for this! The pain and loneliness leave me feeling worthless and sorry I wake up each day. #BorderlinePersonalityDisorderBPD #Fibromyalgia #Arthritis #Depression #Anxiety #WhiteMatterBrainDisorder #spinaltrauma #IrritableBowelSyndromeIBS

    5 people are talking about this

    The 2 Words That Proved Me Wrong About My Daughter

    Sometimes when people talk about children with special needs, they speak about their developmental ages. I used to do this myself. I’d talk about my daughter and say she was developmentally like a 2-year-old even though she was 4 years old. I never really thought about what those words meant — it was more so I could give the listener an accurate perspective about my daughter’s developmental delays. But over the past year or so, I’ve been introduced to an amazing concept — presuming competence. Two big words that can change everything. Two words that have changed everything for me. Around the time I first heard these words, I read a book called “Ghost Boy” by Martin Pistorius. The subtitle on this book is “The miraculous escape of a misdiagnosed boy trapped inside his own body.” Martin was struck with an illness at age 12 that caused his body to deteriorate to the point where he was unable to move or speak. His family placed him in an institution to try and figure out what was wrong. Everyone thought Martin could not understand what was going on around him, but he explains in the book that he was mentally perfectly capable the whole time. He just wasn’t able to express it. Martin tells the story of his abuse at the hand of his caregivers. He talks about the stress his family went through because of his medical state. And all the while he knew what was going on — he just couldn’t tell anyone. Luckily, Martin’s story ends happily. A nurse at his institution believed there was more going on in his brain than doctors had given him credit for. He began to respond to questions by blinking his eyelids. Eventually, he was able to move again and is now able to speak using a communication device. His family talks about the guilt they feel because they did not realize Martin was mentally capable when he was immobile. They would have treated him differently had they known. Presuming competence. It’s hard to do, but it’s so critical. This story and other conversations I’ve had have changed the way I think about my daughter. I feel like I gave up on her, set limitations for her and lowered my expectations for her because of her white matter brain disorder. After she was diagnosed, I saw two different doctors who voiced two separate ideas. One: “If she was my daughter, I’d just go home and treat her like any other little girl.”Two: “You may have to accept that there are things she just might not ever be able to do.” The first doctor made me mad, honestly. She is not like any other little girl! How could I be expected to treat her like one? She has special needs, don’t you know? It was much easier for me to agree with the second doctor. It was easier for me to adjust my expectations for her than to presume she could do anything she wanted. I just needed to help her find the way. The other day at school, my daughter’s class changed their seat assignments. She’s sitting next to a different boy now. Today, I asked the boy what he thought about sitting next to my daughter and he responded, “ She’s hard! ” I was surprised at his answer. I thought he was making fun of her. So I asked “What’s hard about her?” Imagine my surprise when he said, “When we play Brain Quest, she always wins. She beats everybody!” See, her teacher had told me they play this game he made up called Brain Quest. When they have a few extra minutes at the end of the day, they play a head-to-head trivia game using questions he made up about whatever subject they’ve been studying. The game ends when time runs out, and whoever answered the last question correctly is the Champion. It’s a great game, and I love that he does this. Funny enough, time always seems to run out when my daughter has answered a question correctly. She is Champion regularly. But here’s the rub — I thought the teacher was taking it easy on her. I thought he was doing her a service, boosting her confidence. I guess I really didn’t think she could become Champion on her own. I thought it was more of a pity Champion than anything else. I was wrong. Kids regularly avoid challenging my daughter, not because she is an easy person to beat but because she is a very hard person to beat. It makes sense to me now. She is a fact hoarder. She can recall small details about things that happened long ago with ease. I don’t know why I didn’t realize this game was made for her. Imagine my surprise. I stood there open-mouthed, not knowing what to say to this sweet boy who had just rocked my world. I looked at my little girl and said, “He thinks you’re hard!” And she looked at me in a way that said, “ Yeah? I am hard, so what? ” Presuming competence. I thought I was doing it right, but it turns out I was all wrong. I challenge myself now to keep those words at the front of my mind. Why was it OK for people to dismiss Martin the way that they did? Why was it OK for me to assume my daughter’s future was limited? Why is our first inclination to think less of a person instead of looking for ways to help boost them? These should be easy questions to answer, but I know they’re not. This is larger than my little family. This is larger than all our families. If we do not presume competence within our own families, how can we expect it from the world? I do not think there is one bit of danger in presuming competence, but I know there are huge risks if we do not. The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to help celebrate the human spirit? Like us on Facebook. And sign up for what we hope will be your favorite thing to read at night.

    A Letter to My Daughter's White Matter Brain Disorder

    Dear White Matter Brain Disorder, This is hard for me to write because I don’t often see just you. It’s hard for me to think about you even being a you, without thinking of you as being part of my daughter. It’s extremely difficult to even imagine a you without a her or a her without a you. But you are here. I imagine you’re a little proud of yourself for finally having a name, even though it’s a vague one. I know you’ve been around for a long time, just like I know that we humans have finally gotten smart enough to recognize you. I know you’ve probably been called a lot of different things. I know we don’t understand enough about you. I know we realize you’re huge. See, as a person, I find you extremely interesting — how you take away a small part of the brain and yet impact everything. Your science intrigues me, and if I were a young 18-year-old headed out to college, I may have even changed my career path to find out more about you. But instead, I simply see you in one small form, my daughter. Because, see, you make up so much of her. I see you in the ways it took her far longer than others to walk and talk. I see how you made her mouth unable to form words. I see how you make it impossible to run her tongue along her teeth — not because she doesn’t want to but because you’ve never given her the ability to figure out how to do so. I see you in the times I show her how to blow her nose or hold up two fingers. I see you when we’re working on math, struggling so slowly because the concepts just won’t come. I see you at swim practice when she can’t make her arms and legs move at the same time to propel her growing body. I see you when she’s trying to zip her coat, when the sounds in the room are just too much and when the hairdresser becomes a complete nightmare. I see you when I’m on the phone with the doctors. I hate you most when I’m talking to insurance companies. You’re in the room at every therapy appointment and IEP meeting. You’re the reason we’re there. It’s easy to hate you, sometimes. But I’m here to tell you that even though you’ve shaped and are shaping the kind of world my daughter lives in, we’ll be OK. Just like I was born with red hair, she was born with you. These are the things that make us unique. It would be nice if you hadn’t come into our home, but you did. I cried my tears for you long ago, but no more. What you’ve given me is a gift, really. Because of you I got a little girl who isn’t afraid to work a million times harder than her peers. Because of you, my daughter is always the first to volunteer to do something and do it with joy. She simply loves life. She celebrates every success because of you. She tries so hard; it sometimes takes my breath away. You come part and parcel with my daughter. I accept you. You’re a finicky beast, and you don’t always make sense, but you make me see that there are many, many ways to do something. You made me see each step to blowing your nose or making the “V” sound, something I’d never considered before. You made me see this completely other world I never would have known before. You made me stop caring about developmental charts and other people’s opinions at the grocery store. You made me see that I would move the heavens to help my daughter — something I’d been pretty sure of before I became a parent — but know positively now. You’ve made me consider tattooing the word “patience” on my wrist as a constant reminder. Talking to you directly is a little like talking to the elephant in the room. We’re not supposed to do it. But I know you’re there in your little corner, watching, waiting, hopefully staying still. I accept you. I’m not grateful for you nor do I hate you. You just are. I see you there, so be still. Please. If you don’t, the next letter won’t be quite so pleasant. You, right now, are fine. If you try to take my daughter, you will rip out my heart. I won’t be above begging, pleading and driving myself into financial ruin to kill you. I recognize that we’re at your mercy and that you have taken other children. I don’t know why you choose some and not others. I’m not going to ask you to spare mine and take others. I recognize you in the way I drive by a car accident and say a quick thanks that it wasn’t me. I feel deeply for the other families you’ve affected. But if it is your will to take my little girl, you will rip out my heart. So be still, please. I see you. Let her be. You’ve done enough. Follow this journey on This Is My Ordinary. For all of March, The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .

    Physical Therapist Helps Mom and Daughter With Developmental Delays

    We were sitting in a conference room, hearing the results of the evaluation of our 3-year-old daughter. We were dazed. We couldn’t process what they were saying. We’d come for a speech evaluation from the early elementary special education department because we’d been paying for private speech therapy and heard we may qualify for free services. That was all. Just speech. During the evaluation, the speech therapist had asked if she could bring in a few other people to evaluate my daughter. I said sure, not really understanding what that was all about. The results showed a global developmental delay. Not just speech anymore. This was the moment. The beginning. Honestly, we had no idea our daughter had anything more than a speech delay. She was a late walker, but she did walk. Sure, she bumped into things more than the average 3-year-old, but she was mobile. She struggled with puzzles, but she loved to color. Sure, it was mostly scribbles, but she was 3! And yes, we’d noticed the toe walking but didn’t think anything about it. Her speech problem had also been a shock, but we were taking care of that through therapy. We thought she was just a little behind. This large group of women told us a lot of things that morning. Our daughter was to start at the special education pre-school the following Monday, full time. We’d gone in expecting speech services and left with almost every service you could get. Near the end of the meeting, the physical therapist gently asked if we’d considered seeing a physician to find out what was going on with our little girl. Obviously, we hadn’t. This was opening a window to a world I’d never known existed. I had no idea where to go or who I would even seek. I didn’t know what kinds of testing we should do. She recommended starting with a developmental pediatrician, and she had a name and number. Then, the moment of kindness… This woman, whom I’d barely met, said that if it was OK with me, she’d like to come to the appointment with me. In my daze, I said that was fine. The appointment day came and, sure enough, the physical therapist was there. She greeted my daughter and me in this brand new world I was still wrapping my head around. My daughter was a handful, into everything, climbing and grabbing. It was very, very distracting, even with the bag of tricks I’d brought with me. The physical therapist sat with her so I could talk with the doctor and ask questions. I’d peek over at them and they’d be involved in a game. All the while, she had an ear on the doctor and would occasionally interject with a comment or question of her own. She was so calm about the whole thing; it did me a world of good to have her in the room, while I’d gone on autopilot. When we were leaving the building, my daughter tried to break away from me to run through the parking lot. The physical therapist stopped her and showed me how she likes to hold kids by the wrist when they’re an elopement risk to lessen the chance of the child breaking free. I still use that hold on my daughter, four years later. We left that day with a plan to begin a series of tests. Those tests eventually led to a diagnosis for my daughter: white matter brain disorder of unknown etymology. In other words, she has one of the white matter disorders that we don’t know enough about to label. It’s an uncertain future, but we’re forging ahead with guns blazing and expectations high. I know a lot more now and am able to advocate for my daughter successfully. I know where my resources are. But that day, in that conference room, and then in the doctor’s office, I had no idea. And a kind therapist, who we would come to know and love, took her own time to help out a family she’d just met. No one required that she come to that appointment. I would have never expected anyone to do that for us. I didn’t know I needed that. As the years have passed, I realize more and more what a great kindness she did for us. She took a potentially scary situation and made me realize that it was OK. She showed me the way. She showed me how to interact with doctors and therapists. She showed me that my daughter was worth her time. And that this was not the end of the world. She showed me that we’d get through this. And we have. It may seem like a small thing, what she did. But to me, it was everything. For all of February, The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .