Ataxias and Cerebellar or Spinocerebellar Degeneration

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Ataxias and Cerebellar or Spinocerebellar Degeneration
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    Community Voices
    Community Voices

    I'm new here!

    Hi, my name is GG15. I’m new to The Mighty and look forward to sharing my story.






    I want to be heard as if what I have to say about my back problems is as important as what the care provider, doctor, orthopedic surgeon with a medical degree is saying. Pay attention to what I want to tell you, show you and show an interest in what I want to say about what I know of my condition that you do not know because I am a new patient to you. Ask me if I am in pain and what level is the pain I am having. You did none of this with me.

    You had me bend over and touch the floor with my fingertips and asked me to walk back and forth. Then sent me to X-Ray. I was trying to pull up a prior diagnosis on my phone to show you and was having connection issues and you told me to put that thing down (my phone). X-Ray comes back Spinal Stenosis....I already knew that and was trying to tell you that there was much more than that causing problems in my back and spine. You just related everything to the spinal stenosis and ordered an up to date MRI for me. You did ask me if I had considered wearing a brace?? I said no that's not what I need. You replied do you want me to send you to the Neurosurgeon? I said YES! The day before I am to have my MRI at Center for bone and joint surgery, I get a call from the Imaging dept. telling me they do not accept my insurance. Why did your staff not check to make sure my insurance would be accepted where you were sending me for an MRI? So they faxed my PCP all the information and she sent a referral to Good Samaritan Diagnostic imaging for me to get an MRI on Feb. 2nd...I'm waiting for a call that does not come. I call Good Samaritan who says they do not have a referral for me it is now Feb. 8th I call Conviva Health Care Green Acres and told them a referral for me to have an MRI was not found. So lets send it again. I call to see if it has been received.. NOPE. I said I bet they do not have the right FAX# to send it to. BINGO!! Incorrect Fax #. So my first visit with the Center for bone and joint surgery was on Jan.28th I am scheduled for my 2nd appointment and supposed to bring the disk of my MRI results with me to orthopedics at the center for bone and joint surgery today Feb. 10th at 8:30 am. I have not had my MRI yet. I want you to know that I have been and I still am experiencing excruciating unimaginable nerve ending pain which has left me unable to do my daily routine. I have no use of my left arm today and I am left handed. I have had days where I can not squat or sit down to use the toilet without screaming like a banshee. I can't sit or stand at times and the pain shifts from one area to another and at times all over from back to front head to toe unbelievable amounts of pain. I have been to urgent care who treated me as if I was just looking for a pain pill fix. First words out their mouth...we do not give pain medication. I want an anti-inflammatory injection. I do not like pain pills they make me sick. Besides it is mostly bone on bone pain. Not much in the pain med department for that. Let me guess it was because I am a walking billboard of tattoos, lol Next I end up at the emergency room, 2 people in the ER me and another girl who is just waiting for her paperwork so she can leave. Do my vitals and ask what is it you are hoping to get from us today?? I want some kind of relief and not pain pills. 2 1/2 hours later before the nurse practitioner comes out to see me. I am crying and having spasms that cause me to scream out and now there are 6 people in the ER. Anti-Inflammatory shot Muscle relaxer shot and scripts for cyclobenzaprine 10 mg and 600 mg Ibuprofen. It did not work at all. My PCP send in a script for tramadol 50 mg but only 9 pills and 6 cyclobenzaprine 10 mg pills and 400 mg Ibuprofen. Guess what it worked. She only gives me 9 tramadol and 6 muscle relaxers. PEOPLE WHAT IS WRONG WITH YOU??? I have been wanting someone to help me I am in serious pain. I can't function, I am in a helpless situation with excruciating pain. For 13 days as of today I have been crying and screaming in pain. And nobody is listening to me, patient engagement failure, staff failure on Insurance check for MRI center. Staff failure with correct fax number for MRI referral. Because of you and your failures to provide me with the care services I needed and still need but have not been given I have to continue crying and screaming in pain. I graduate in April with a Bachelors of Healthcare Management. Brush up on your skills is what you need to do. Listen to what your patient has to say! It is not okay for me to be in this much pain. Do something about it!

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    Community Voices
    Laurie Geary

    What I've Learned as the Mother of Two Children With Cerebellar Ataxia

    To the mama of multiple kids with disabilities, As a mama bear of four beautiful babies, I can honestly say I never thought my life would look the way it does. I’m the mama of four, two of whom have disabilities. My oldest child, age 6, has cerebellar ataxia, a genetic disorder that is likely hereditary. My 4 and 2 year olds are typical, and my newborn may also have ataxia. I think when I started my journey as a mother with my oldest, I thought, “Oh, this is hard. I’ve got this though.” I quickly became and expert on OT, PT, speech, specialists and more. We navigated misdiagnoses and learned how to advocate for his needs. We worked hard to help him meet his milestones and reach his potential, and are still working hard alongside him today. When I had my second child, and all my fears of her having delays quickly subsided, I was so relieved that I almost felt guilty for the feeling. Baby number three was born 14 days late in a whirlwind with his broad shoulders that got stuck in delivery and severe lip and tongue ties. We resolved the initial feeding issues quickly, but I found myself on pins and needles watching him, making sure he met milestones, asking my son’s therapists if what he was doing was developmentally appropriate. He’s my “in between” babe. He taught me patience and trust. So when baby number four flew into our life, I tried to not let myself worry. We learned while pregnant with baby number four that all my babes had a 50% chance of having the same genetic disorder as my oldest. I told myself to just enjoy the moment, that I’d been paranoid in the past and worry wouldn’t help anything. But something wasn’t right. Feeding issues, a nagging feeling that something was up, that momma gut that just won’t stop nagging. When she was 6 weeks old, things changed. Before this I saw myself as the mom guru. I had been there, done that and rocking it. But when my fourth didn’t pass her swallow study and landed in the hospital to get an NG tube, my head spun. I was immersed in fear of unknown. My first baby’s disabilities all revolved around things like leg braces, glasses, motor and speech delays. I didn’t know anything about feeding tubes, pumps, aspirating. My newborn and I were ripped from a breastfeeding relationship I may never be able to experience that again. Now, a few weeks after our week-long stay in the hospital, we are finding our new normal, and that is not something I thought I’d be able to say. But here we are, the scariness and unknown, with a beautiful little baby who is now thriving and growing thanks to a tube in her little nose. I’ve found a strength and confidence I didn’t know I had inside me. Like I said earlier, I can honestly say I never thought my life would look the way it does. Instead of play dates, piano lessons and ballet, my world spins with therapies, specialist appointments, orthotics, feeding tubes, glasses, sensory items and medicines. My diaper bag has tape, scissors, syringes, a stethoscope right alongside diapers, wipes and changes of clothes. And you know what? I wouldn’t change it. My four children are my world. I would do anything and learn anything to keep them safe and thriving. Our life is not normal in any sense of the word. But our life is full of love, chaos, joy and hard work. My four children are my world, and I have a deeper sense of purpose to help those in the world thanks to my own children’s stories.

    April Feagley

    When Life Takes You Off the Beaten Path of Parenting

    Remember the aisles upon aisles of parenting books that mapped out the way forward from infancy to “teenagerhood?” All of them shared what to expect, what to do, provided troubleshooting and offered encouragement. You know what else they did? Ended at 18. Like it was some sort of parenting finish line you cross, celebrate and accept your congratulations. Most people are not so naive as to believe parenting ends at 18, but the typical pattern falls into a gradual path of children to independent adulthood: education, partnering, careers and starting a life of their own. But what if it doesn’t? What if that trajectory is temporarily or permanently altered by a mental or physical health diagnosis or addiction? What if your family find themselves leaving the well-worn path forged by so many before them, to battle the underbrush and branches blocking their way and tripping their steps as they fight to keep up forward momentum? Congratulations and consolations, you have entered the world of off-road parenting. You are parenting an adult who is autonomous in seeking care and divulging their truth publicly. It’s their story to tell and, while you strive to respect their privacy and their rights as a person, it can be incredibly frustrating to watch your child (and they are your child, always, even in a mature body) try and fail, rise only to fall and struggle under a weight that would crush even the strongest soul. The dichotomy between life inside your home and outside your home is enough to give you the bends. Within the family, there are appointments to make and keep, red tape to untangle and a steep learning curve that everyone seems to be sliding off of rather than climbing. There are power struggles between loving parents who want what’s best, but also wanted a break and a young adult who found their wings clipped just as they were supposed to soar. Outside the house, you field unanswerable questions with a choreographed exchange of information designed to explain while not divulging. Inevitably, you feel unauthentic and somehow unsupported if you avoid sharing anything and disloyal if you share too much. You smile and grit your teeth as you hear about graduations, job offers, engagements and babies, and steel yourself against queries beginning with, “What is (insert child’s name here) doing these days?” And, lest anyone mistake me here, I want to emphasize none of these feelings are born out of embarrassment or shame! Most of us are witnessing feats of strength and a depth of character that make us proud every minute of every day. There is a sliding scale of meritorious accomplishments depending on the battle. Getting a shower in the midst of disabling depression, using a mobility aid for the first time in public, going to rehab, or simply saying, “I’m ready to try again,” are all victories. All of this to say, I don’t have any of the answers. I’m not qualified to write, “What to Expect When Things Go To @#*&.” What I can say is, “I see you, off-road parents. We’ve lost the trail too. I can’t draw you a map, but I can recommend some good tick spray.”

    Community Voices