Spasticity

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    Post

    Just be her Mom?

    Thinking back to a social media post I shared about being a mom and all of the duties that come with that title. The post was about all of my day to day duties and everything that goes into raising and caring for my daughter who has significant health care needs. I thought about how I, as her mom, complete daily tasks that several professionals would do individually in another setting. Examples: nursing to handle medicines and tube feedings; respiratory therapist to handle breathing treatments, suction, cough assist and chest percussion therapies; a physical or occupational therapist would handle stretches, massages, and other movements that help with muscle tone and #Spasticity , her scheduler managing numerous appointments to doctors and specialists. Those are just the medical side. She still needs the things that all human beings need and want: shelter, cleanliness, entertainment and most of all love.

    When you are a single parent and doing all of those things daily; just being her mom gets lost! I find myself “on the clock” more than ever. It all seems to be heightened since living through a pandemic for almost two years now. There is no escape from or break in the daily routine. No days to sneak away to the movies. No Target runs that lasts for hours at a time; with Kerstin enjoying people watching and listening while browsing the clothing and accessories. Yes, her momma got to enjoy the treat of a Frappuccino from Starbucks and checking out the clearance endcaps. Those things are so dearly missed as we continue in our pursuit of keeping a young lady who has multiple disabilities, one being Restricted Lung Disease (RLD) safe and as healthy as possible.

    Just be her mom? That is hard to do when, 24/7, I am wearing so many hats with barely any break in the cyclical nature of each day. We are not going many places, as I mentioned earlier, to break the pattern often besides doctor appointments, drug store runs and grocery drive ups. We are not making visits to the homes of family or friends and there are rarely visitors to our home, for the obvious safety and health concerns. The things we are doing for “fun” still keep us safe at home: new movies when they are available to stream or yard meet-ups with family when the weather is nice and health permits.

    Just be her mom? In order to do that safely, effectively, and efficiently, mom has to think of herself as well. The things that I do to pamper and comfort my daughter are some of the very things that I need for myself. This is why self-care, self-love and mental outlets are so critically important. As parents of children with special health care and disabilities, we are often reminded of the quote, “You cannot pour from an empty cup.” There are so many days when we are on our hamster wheel, running on fumes and seemingly going nowhere, we must remember that in order to be top notch we have to me caring and considerate of our own well-being.

    The act of looking after the care of another who is either sick of disabled is “caregiving”. While providing care for my daughter is expected and required, doing it non-stop and as a single parent can be tasking. Exhaustion is real and it is not just physical. Burnout can set in and cause a parent/caregiver to be less alert. This weariness can potentially be harmful for the person we are caring for when their needs are not met in the proper manner.

    Just be her mom means that I am taking care of myself. Yes, enjoying the journey of growing knowledge of what it takes to care for my daughter and all of her needs. Advocating for her care, health, inclusion, rights and more. In doing all of those things for her, I have to do them for myself as well. Take breaks, read some fiction, stream a series or two, get outside to look up at the sky, feel the breeze and the sun on your face, grab that macchiato or latte or Frappuccino. Do something you love! Talk to someone, professional, if you feel that is what you need. Take care of YOU, holistically. Keep that quote, close to your heart and in memory; keep your cup as full as possible, that is the best way to just be their mom, dad, sister, brother, grandmother, aunt, uncle, etc..

    Resources:

    Caregiving.org

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    Visit to a Specialist

    I’ve been waiting for my specialist appointment since my discharge from the hospital, which was organised about 7 weeks ago. I was full of expectations. I thought this appointment was the start of ‘getting better’, finding answers, and having a professional champion in my corner.It was not a good start to the appointment. There was no accessible parking which meant a considerable walk to the clinic. This exacerbated my symptoms, and fatigue set in. I was tired, and before I even had the opportunity to talk to the specialist, I was at my worst.

    The paperwork
    To continue with these difficulties, I needed to complete approximately 20 minutes worth of paperwork on entry. I struggle with handwriting. On the best of days, I limit myself (I’m messy, it hurts, and I prefer computers) due to cramping in my hands. I normally pre-empt this and prefill all information at home electronically before any specialist appointment. There was nowhere to sit comfortably, so I needed to hunch over. Needing to hunch again exacerbated my symptoms, and the pain started to flare up.

    Due to my car being over 10 min walk away, I had no opportunity to grab some pain relief (I know I should have been prepared!). I had to wait my turn. Forced to sit uncomfortably and remain somewhat positive as this might be the appointment I get some answers. Or at least an extended long-term plan.

    It didn’t start well
    The appointment was 45 mins late; I was stiff and tired. I was not in the mood to head in for my consultation. I pulled myself together, walked into the consulting room and started to tell my story. Noting this specialist saw me for the duration of my 32-day stay in the hospital and then prior similarly two years earlier. The discharge summaries I emailed earlier were not in my file. Again, my medication list was emailed as part of my referral and was unavailable (note he prescribed me all of my new medications). I needed to email to doctor during my appointment for an updated list.All the standard questions, tests, looking at my ‘spastic’ gait (yes, that’s what the doc said). I know it’s a medical term, but I struggled after that; we have moved on from those terms I thought in the ’80s & ’90s. A walking speed test was done, and then the standard reflex test.Apparently, I’ve got Hyperreflexia, ‘i.e. an overactive or overresponsive bodily reflexes’ in my legs. Weird that I have never heard this before. My legs have always responded quite dramatically to the reflex test, but I assumed this was ‘normal.

    Your legs are spastic aren’t they
    Once again, your legs are really ‘spastic’, aren’t they? Noting that, yes, in fact, this is a medical term. However, other terms now are less confronting and offensive (tremorous, neurasthenic, shaking, over-responsive, involuntary movements, your legs are showing signs of spasticity etc.)

    It’s getting real
    Possibly not angry with the specialist for using outdated terminology (although I would like him to try and update his vocabulary).The more I document, reflect, and share my story, the more I accept that this is a permanent condition. Yes, there are ways to ease my pain, improve mobility, reduce muscle tightness etc. The simple fact is I have a disability that I and others around me will need to adjust to this constantly. This makes me angry sometimes; sometimes, this makes me frustrated. But as we have done as a family for more than 22 years, we dust ourselves off and get up. My mantra is to keep moving forward.

    Read the full story here: jeramyhope.com/visit-to-a-specialist

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    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).

    Post

    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

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    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

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    See full photo

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

    You asked, an expert answered!  ​💡

    🧠​ Here’s what neurologist Dr. Elena Grebenciucova had to say:

    “Exercise is very important for all people living with multiple sclerosis. However, creating an exercise plan is best done initially with a physical therapist to ensure that the type of exercise you are doing is ultimately safe for you, in case you have some level of trouble with balance or weakness. Exercising 3-4 times a week for 30-45 weeks is ideal, but many patients new to the exercise regimen or still recovering from their recent attack need to ease into exercising very slowly and gradually increasing their time. For example, if you are very fatigued, you may find it very difficult to exercise, but if you try and set a goal of just 10-15 minutes 3-4 times a week, and then gradually over time increase it to 20-30 min and finally 30-45 min, the process may be easier.

    For those people who experience spasticity/muscle spasms, stretching before exercise is critical. Also, you have to make sure that you are not overheating during the exercise. In order to avoid overheating, make sure you hydrate plenty prior to exercise and during exercise, wear appropriate clothing, and take frequent breaks, as well exercise in a well-ventilated, cool area. If you still feel that exercising causes you more muscle spasms or heaviness in the legs or more tingling, try to reduce the intensity of the exercise and take more frequent breaks.

    Aerobic/cardio exercise is important for all patients with multiple sclerosis. Exercise helps to reduce fatigue levels, improve mood and sleep, and maintain muscle mass in those people who may have some level of weakness.”

    #MultipleSclerosis #Disability #ChronicIllness #ChronicPain #MentalHealth

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    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

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    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?

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    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?