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    Community Voices

    Ongoing look for solutions to what truly ails me.

    Had a new neurology visit today via zoom! I hate zooms! Sent because I continue to have neurological issues. Doc does not think MS, maybe a pinched nerve in my neck, but at least it gets me my cervical MRI. On my first MRI 3 years ago there was one T2 hypersensitivity in an area of my basal ganglia, which is the area dealing with movement… my greatest issue. But new doc eyes will see what comes of this. Many of my symptoms just don’t match my two diagnoses of PsA and Lupus. I’m certain about the PsA, not so certain about the Lupus. My symptoms have to do with major spasticity in many areas of my body, twitching caused by what feels like electric shocks, gait issues, urine inconvenience, no temperature regulation (reynaulds and never know when I have a fever, unless I wake up sweating), neuropathy started in big toes and finger tips, shaking events that they say are not seizures but yet affect my speech and thought process while it’s going on ( only stops by taking Ativan), disorganization so bad I don’t want anyone to come to my house anymore (that thought makes me cry), fatigue yet thankful no organ involvement at this point (although I’ve been scared numerous times).

    Community Voices

    The Art of Living

    Part 1 of 2 My daughter, Laura was born with #Cystinosis . Laura went through so many struggles medically in her life. Laura was a firm believer in science, in the potential treatments to be found, in making life better for the next person, always happily being a guinea pig for any medical study that came along. She didn’t long for a cure, she longed to live the best life possible. #Cystinosis was just part of who she was, like being a 4’10 blondie.

    In 2017 when Laura’s first #Transplant failed. She quickly began hemodialysis, and it was awful. Laura ended up with uncontrolled blood pressure which made her brain swell. For days, she couldn’t communicate other than to make the “Ma” sound. She was in this spastic body and you saw her fear and frustration in her eyes. She developed #Clostridiumdifficile while she was in the hospital and I quickly learned in the ICU they could not diaper her. Let me tell you it was amazingly gross; the poop literally flew. The #Spasticity that was happening added to the mess. She was scared, you could see it in her wild always open eyes, and she wanted to be touched every moment. We took turns sleeping in shifts so someone could have a hand on her 24/7. The doctors said she may need step down care, rehab type care which was so very scary. As she began regaining her mind and the swelling subsided I walked into her ICU room to see her on her knees on the bed singing “Despacito” at the top of her lungs swaying to her tune. Laura was coming back. It was decided that she would come to my house and live. She and her two dogs came to my house after this hospital stay. It was rough in the beginning. The dogs were wild and Laura was so very confused. She would wake up yelling for me not sure where she was, in some ways like a child. As she came back to herself, she told me when she couldn’t communicate she was in an episode of Modern Family, her mind took her away to another place that was safe from the pain. She could not drive at this time and I recruited people to give her rides to or from dialysis. Hemodialysis was rough. She would come home wiped out, legs cramping. She had minimal energy, sleeping tons, lots of headaches. We were taught to do peritoneal dialysis (PD). We went to classes and sat through days at clinic so SHE could take control of her healthcare. A new port put in and we found out that Dobby (her first transplanted kidney) was dead inside her and needed to come out immediately. She got through yet another surgery and she moved onto PD. She settled into the routine of 4 exchanges a day, every 6 hours, time windows for fun. She could have used the cycler machine at night but she worried how that would affect her dogs and her sleep. Laura valued her dogs and sleep way more than anything else.

    Laura’s life over those few years was rough. She learned to have a clean car so she could do her exchanges as she chased adventure. And she did have adventures, she went to Miami and Los Angeles for festivals, to London and Ireland for two weeks and saw her beloved Harry Potter sets, Arizona, Philadelphia a couple of times, places that I can’t remember because she was always planning her next adventure. She adapted to her new reality which was what Laura was- adaptable. When life threw another curve ball and her foot was fractured and needed surgery. She adapted. Even as a child when she would constantly throw up, she accepted it, made it just something she did and moved on. She didn’t know the words, “You can’t do this” or maybe “you are just too sick or hurt”. Once she figured out how to make her life work around whatever obstacle she started making plans. The girl was a planner. We had so many plans, lists of places to go, people to see.

    But, in October of 1999 Laura was hospitalized and this time was different. when I walked into the hospital room I knew she may not recover. This time might be the one she couldn’t overcome. As the days progressed, she could not even give a feeble thumbs up, her eyes were closed and minimally reactive. I started trying to adopt her bravery, I had to face that my girl may not be able to come home again. Laura didn’t like you to dwell in sadness, she wanted giggles and grins and that was what I needed to give her. On October 15th at 11:30am she left this world surrounded with laughter through tears and boundless love.

    The best thing about Laura was she loved her people. She collected them like seashells, that, I like to think, she got from me. Once she made you part of her heart you resided there forever. And you were lucky. To be loved by Laura meant tons of laughs, singing at the top of your lungs barreling

    1 person is talking about this
    Community Voices

    How much do you push your body when in an effort to fight for mobility you can’t control the nerve pain or the muscle spacticity and spasms?

    I’m living with chronic intense spine pain with nerve damage and muscle atrophy in my lower body. Just a few weeks ago I was in a wheelchair for eleven days straight and could not walk at all. I haven’t been able to do anything besides the bare basics of caring for myself and my pup. Yes, the bare basics. I’m not in a wheelchair right this minute but I cannot walk without my rollator or walker with my attached cane. It’s been that way for a long time now, years.

    Anyway, I’m trying to walk (via walker) and track my steps, push myself a little more each day.

    The pain, burning and numbness take over my body and I have to stop repeatedly to bend my spine forward and relieve the pain and pressure, ease the burning. It’s horrible and the pain sucks but still, I want my life back and I’m not going down without a whole lot more fighting (again). Yes, I’ve been living with chronic pain my entire adult life, so it’s been an ongoing battle for years.

    The problem I’m having right now and daily is: when I’m pushing for mobility and trying to save my lower body (mid spine to feet) from being permanently paralyzed I’m fighting nerve damage that only relieves with ice for hours (mid to low spine and bum and hips) but muscle spasms that only relieve with heat (legs/feet).

    Just exactly how much muscle spasms/spasticity is too much and how do I know if I’m pushing way too much or just not enough? I’m really not knowing and I know if I don’t keep fighting and just stay in whats comfortable and least painful I won’t be out of the wheelchair very long. Any tips, advice? I welcome them all please. This pain is making me a little bit nuts and I’m using ice and heat at the same time to combat the different parts and symptoms on my lower body. I’m exhausted and frustrated to say the least. #ChronicPain #FailedBackSurgery #Nervedamage #DDD #Osteoarthritis #spinestimulator #migratedleadwire #Exercise #Neuropathy #MuscleWasting #Tremors #numb #tingling #Burning #Spasticity #musclespasms #mobility #Fibromyalgia

    12 people are talking about this
    Community Voices

    #AskMe : Are there certain exercises that can help someone better manage their MS?

    <p><a class="tm-topic-link mighty-topic" title="#AskMe" href="/topic/askme/" data-id="5bc4f46d95775e00ad460618" data-name="#AskMe" aria-label="hashtag #AskMe">#AskMe</a> : Are there certain exercises that can help someone better manage their <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce9f00553f33fe998486" data-name="MS" title="MS" target="_blank">MS</a>?</p>
    Community Voices

    What would it be like

    How’s it going to be when I walk and talk a little faster
    How would it be going up and down stairs in a breeze
    And walking in the park
    How would it be
    walking hand-in-hand around the mall and around town
    Opening doors for you and pulling out your chair
    How’s it going to be
    Not falling and meeting the floor again and again
    Raising fear and being picked up
    How would it be
    Without a wheelchair
    Without a walker
    Without a cane
    How would it be with no PT, OT and physiologist needed
    How would it be
    With clear vision and no optic neuritis
    no TN pain
    No spasticity
    How would it be
    With no sudden urgency and
    No tremors and Eating with your dominant hand smoothly
    No sitting breaks all the time
    How would it be
    Carrying in groceries and putting them away
    No walker with a tray
    How would it be
    With no wife working three jobs In hopes to make ends meet
    How would it be
    Not being carried and helped up and down stairs
    How would it be
    Not needing medication to manipulate your immune system
    To have your body not attack itself
    How would it be
    with no pillow between your knees and walking straight
    Going to sleep with no fear of getting worse
    How would it be
    Not to need a reacher and to bend down without your knees coming together
    How would it be
    Not to furniture and wall surf
    But have great balance instead
    How would it be
    Not to have cold and heat sensitivity
    To drive again
    How would it be
    With no MS
    Cause I wouldn’t know

    7 people are talking about this
    Community Voices

    Do the side effects of tizanidine ever “get better”?

    I have been prescribed tizanidine for spasticity from MS, but the side effects of the drug are interfering with my daily functioning. I am so sleepy and weak for several hours after taking it that it’s almost as disruptive as the spasticity it’s meant to treat. Has anyone experienced developing a “tolerance” or getting used to the side effects over time?

    2 people are talking about this
    Community Voices

    Spasms and increasing spasticity

    I have mild spastic cerebral palsy, I've noticed that my muscles are becoming stiffer and more painful every day. Plus the spasms that I've been having in mostly my arm, my CP is having a party atm. Normally I'm not that effected by my spasticity in my every day life. My doctor confirmed that my spasticity is worse than my normal. She recommended physiotherapy to relieve the pain. I'm just frustrated that it just hurts and that it impacts my movements.

    How do you handle or deal with your spasticity or bad days with CP?

    4 people are talking about this
    Becca R.
    Becca R. @beccar

    Dear Medical Students: I'm a Disabled Person, Not a Lab Specimen

    Growing up with cerebral palsy, I went to the doctor more times than I can count. Each time I visited my orthopedic surgeon at a teaching hospital, the med students would come in, do their thing, go out to talk to the real doctor, and then they’d all come back in and tell me what they thought. When I graduated high school, my orthopedic surgeon told me I only needed to come back if I was having troubles since I stopped growing after puberty. I thought the days of feeling like a teaching object were over. Like many people I’ve heard of with cerebral palsy, even though my brain damage has stayed the same since I was a kid, the overall toll my body has taken from the years of abuse it has endured due to its inability to move efficiently has started to catch up to me. At 28, I live off Tylenol and a medication used for nerve pain to manage my daily pain. I don’t want to do that anymore because I know I’m already on enough medications for my mental health to damage my liver if this continues long-term. I want to treat the root cause of the problem. That takes me to the doctor’s appointment I had this week where I was transported back to being a child. The medical students came in and did their thing before the doctor arrived. I have to say that the outcome of the appointment was what I was hoping for – Botox injections to manage my spasticity — but looking back on it, I’m left with a bad taste in my mouth for how I was treated during the appointment. Because I completed most of physical therapy school, I understood a lot of what the medical students were talking about and I could appreciate their excitement when working with a patient presenting with real pathology. We were all joking around in this appointment, but I know that had these medical students acted like this when I was a child, I’d have been devastated. There were two medical students working on my case, a first-year and a fourth-year. The first-year medical student just observed while the fourth-year student did the exam. Since this was my first ever appointment with this doctor, they had to evaluate everything. This is where things got awkward and uncomfortable because the fourth-year medical student would get excited assessing my spasticity and feeling clonus. It seemed like he didn’t even try to hide his excitement. Don’t get me wrong, I love helping students learn. I have been a practice patient for a local physical therapy program many times and loved it. But this time was different. I was seeking help and the medical students were excited to assess the aspects of how my body functions that genuinely interfere with how I want to live my life. As a practice patient, I chose to be placed in a situation where students would learn from how my body works, but at this new doctor, I didn’t. It feels like to the medical student, those symptoms of spasticity and clonus are just some cool science experiment and I was a lab specimen. He treated me like a project. To me, these symptoms represent mental and emotional pain as well as a lifetime of disability and limitations. With my history of being in PT school, I understand how the medical students acted, but if I were still a kid, I’d have been devastated. I hope that in the future these (and all) medical students and doctors work to mask their excitement and act professionally so patients don’t get treated like pathological objects.

    Why I Dread Winter Weather as a Power Wheelchair User

    It’s the beginning of winter again already, and summer feels like a memory. The days are grey and chilly here in Vancouver, BC, and there is a moistness in the air — a foreshadowing of what’s to come. Soon, the periodic showers will become a near-constant rain, often accompanied by a biting wind and a bone-deep chill, punctuated by storms that tip over garbage bins and litter the streets with twigs and branches. The nights will be long and the days will be awash in various shades of grey. I hate this time of year. For the next six months, my freedom will be limited, my dependence on others will increase, and my mental health will be impacted. Since my ability to stand and walk is limited, I use a power wheelchair. Navigating the world in a wheelchair is often challenging as it is, and the poor winter weather only exacerbates that. In the rain, I must take care to keep my wheelchair’s electrical components and seating dry, and not allow the motors to get too wet. When it snows, I am basically trapped at home until the snow melts. I can never be certain if all the sidewalks have been cleared (wide enough for a wheelchair). Fortunately, the rain often washes away the snow fairly quickly. However, if it freezes overnight, the leftover snow turns to ice and becomes impossible to travel on. Traveling outdoors in the winter is far less safe and I am always anxious and hyper-vigilant, worrying about drivers not seeing me, or patches of ice or debris in my path. In order to stay warm and dry, I must bundle up and shield myself against the icy wind and rain. Due to the limited range of motion in my arms and shoulders, I require help to don first the jacket and blanket for warmth, then the rain chaps and plastic poncho. (As a power wheelchair user, finding warm, waterproof outwear that is reasonably priced and fits comfortably is a challenging endeavor!) Once inside these layers and secured with my seatbelt, I am stuck in my wheelchair until someone can help me get out of them. Depending on who I encounter at the end of my journey, this can be a quick and easy experience, or it can be fraught with discomfort, frustration, and even embarrassment. Until I am able to remove my outerwear, I often feel quite claustrophobic and vulnerable, especially since the bulky layers limit my range of motion further, and the wind can sometimes blow my poncho up into my face. The extra tension and anxiety exacerbate my abdominal spasticity, and I fatigue more quickly. The cold dampness stiffens my joints and increases the chronic pain emanating from various areas in my body. I spend much more time at home as a result, unable (or unwilling) to cope with the effort and added discomfort of traveling outdoors. By December, my mental health will be impacted. The loss of freedom and independence, as well as the increase in isolation will begin to frustrate and sadden me. This, coupled with the wet and grey weather, will exacerbate my OCD and invite depression to settle in for the rest of the season. I have already begun taking an increased dose of my antidepressant in preparation for this inevitability. It won’t prevent a mental health dive, but it will smooth out the edges so I’m more equipped to cope with it until spring returns with the sunshine and warmth. Every year, around this time, I experience anxiety about the coming months. I know I’m not the only one who dreads this time of year. For many people, winter is a challenging season, physically, mentally, and emotionally. The best way I know how to cope is to be prepared with the items, clothing, and coping tools that will help me navigate through the season. When I’m frustrated or can’t find a solution, I seek the advice of others who have struggled with the same issues. Who better to understand the struggle, and to know the tricks and tips of managing the challenges of winter living than our peers? So, if you have any advice or links to products you have found helpful, please share them below. (I, for one, am still searching for the perfect winter outerwear for a power wheelchair user!)

    Community Voices

    New To The Group

    Diagnosed at age of 30 on December 2017 with RRMS. Took 4+ years and 5+ doctors to finally get diagnosed. I have lesions in the brain and spine. Main symptoms are leg spasticity, numbness and tingling. Sometimes get a buzzing sensation in the up back near the shoulder blades. Would love to meet new people and connect with individuals.