Going To The Gym aka Extreme Sports

13593724_s editedAm I able to use the gym? The questions people ask! Heavens, I inhabit the same world as the rest of you…or do I?

Going to the gym is like careening through a rabbit hole into a surreal Wonderland full of disquieting adventures! While I watch fellow “athletes” deftly execute coups of gluteus, hamstring and trapezius on strange, weight-bearing apparatus, I largely refrain from partaking in their revelry, instead creating my own zany tea party.

For starters, any unstable surface challenges this house of cards, causing my muscles to go haywire and summoning my core to control the show. My Mad Hatter is a device I call the “marshmallow” – flat on one side, rounded rubber cushion on the other (exercise mavens know this as the Bosu ball). My feat? I “stand” on the rounded surface and wave my arms in the air to further mess with my balance. Give that device a go during an earthquake and you’ll see my task isn’t quite so easy as it looks.

My personal triathlon involves a deceptively simple maneuver – the one-legged squat – on stable ground. Try supporting your entire corpus on one leg and then bobbing up and down while engaging in bodily combat with movement disorder! My left leg insists on a quirky diagonal directional that precariously holds my weight as I teeter through the motion while somehow remaining upright. Three sets: that’s a workout!

For much of my life, the gym didn’t even appear as a blip on my radar. Courtesy of a handful of trainers who’ve done Lewis Carroll proud, I’ve crafted my own realm of possibilities. Rather than coveting unreasonable exploits beyond my reach, I rule over the territory I’ve conquered including a tamed Madame Bosu – now that deserves a spotlight on my résumé!


24 responses to “Going To The Gym aka Extreme Sports

  1. Dear Pamela Funny you should bring up the gym. I just started crossfit class yesterday. It’s a different kind of physical torture, but I’m hoping it will do some good. Especially since what we have is muscular in nature. I’m hoping this new form of exercise will strengthen the weak muscles that can’t keep up.
    Cheers to on you journey.

    • Mike, Wonderful to hear from you again. You’ve hit the nail on the head! Notwithstanding our Dystonia, we need to try to keep ourselves in shape and, as far as I’m concerned, our unaffected muscles as strong as possible. Doesn’t take much to challenge me in the gym but I know my accomplishments! -Pamela-

    • Mike, I’m really hoping you checked the little box that gives you the option of receiving follow up comments by email. I’m quite interested to find out how your experiences with CrossFit are going!

      I have tardive generalized dystonia and have been a member and a coach at a CrossFit gym for about five years ago. It’s been an… interesting experience. But one that I think that has ultimately helped me (also it’s been a lot of fun). And it’s also raised a lot of questions like what happens in my brain where I can snatch 95lbs or do a muscle up without signs of disordered movement when symptomatic but can’t walk through a crowded class without going into a posture? Super cool stuff!

      Would LOVE to hear more and compare experiences!

  2. Meredith Berkman

    You amaze me in so many Ways I love the way u write!!! What kind of response are u getting?

    Sent from my iPhone

    • Meredith, Praise from you is of the highest order! I’m very happy with the response to my blog, not only here but on the various Facebook groups and pages where I post. I undertake a tremendous effort to spread awareness and support others via Chronicles Of A Dystonia Muse and my social media activities. Who ever thought I’d become a Tweeter! -Pam-

  3. healthiestbeauty

    Reblogged this on The healthiest beauty.

    • Thank you for the reblog and following Chronicles Of A Dystonia Muse. This is such an important undertaking for me and I cannot tell you how much it means when other bloggers help me spread awareness. Best to you. -Pamela-

  4. Pamela, I’m enjoying your writing and understand your frustration with a body that refuses to cooperate. But mostly, I admire your courage, your humor, and your spirit.
    Kudos to you!

    • Hello Tonya, Wonderful to see you here and thank you for your kind words. While my body can be a source of frustration, I really try to keep things in perspective and face my challenges with humor. After all, a smile is way better than a frown! Enjoy your weekend. -Pamela-

  5. Pam, your metaphors get better and better! You are truly amazing!
    Love, Roxene

  6. you are doing great way ahead of me. I consider walking to the bathroom a marathon and using a stretchy band thing while sitting a woekout!

    • Margo, I’ll take that as a compliment though I must say walking 5 blocks to the subway is my version of a marathon! Battling those muscles certainly consumes energy. The bright side: mini-workouts every day! -Pamela-

  7. Hi Pam Keep up the good work. The harder I work the better I feel. We all have our own way of keeping fit. For me it’s working hard and staying active.

    • Hello Donald, Always a treat to see you here. Exercise certainly has its rewards. Once I’m at the gym, I’m happy as a clam. The challenge is motivating myself to get there in the first place. Hope all is well with you. -Pam-

  8. Angela Harshbarger

    Good for you. I read The God Squad. Quite an eye opener.

    • Angela, I truly appreciate all your comments; I can always count on you! Yes, The God Squad is an incredible read – heart-wrenching, revealing and inspiring. Not often does a book come along that so profoundly influences me. I’m thrilled to have shared it with you. Take care of yourself and enjoy the rest of your weekend. -Pamela-

  9. You are amazing . I totally believe in exercise. i’d like to RUN, but find walking is possible …..so, i walk on treadmill and do lots of floor exercises…..stretching, etc. hanging in and ..also do my exercycle …..just have trouble when I stop and start…..freezing and knees lock and hips…..so I consciously have to say, slow down……..YOU move too fast….slow is OK!!!!!! keep movin, Pam and love to get your updates……….

    • Iris, Lovely to hear from you again. I enjoy a bit of variety at the gym and I’m sure to stretch every time. I’ve a bad back so my level of exercise depends from the state of my back…and my motivation getting to the gym in the first place! Once I’m there, I love my “toys!” As for cardio, walking to the subway can be a workout but I aim for that stationary bike. -Pam-

  10. Ok so I have just recently found out that my tremors maybe dystonia.. I had an attack after working out at Crossfit (which I have been doing for 3 months now). I want to get back to it asap but am alittle scared as I do not know much about this dystonia.. my wedding is in less then 4 weeks and sitting around wondering isnt getting me to my goal! So you are a Crossfit teacher and you have dystonia? Is there anything I need to be aware of or take into consideration if and when I start back up next week.

    • Monica, While there are two comments to this post mentioning Crossfit, I’m not a Crossfit teacher and I have no experience with this workout routine but I wanted to answer your comment. Most importantly, if you think you may have Dystonia, I recommend you see a Movement Disorder Neurologist for diagnosis and appropriate treatment (which tends to be highly patient specific). While i totally understand your desire to get back to Crossfit, I urge you to exercise caution, particularly with your wedding approaching. Certainly, I would inform the teacher or trainer about your physical limitations and avoid any position that you find awkward. Dystonia causes involuntary muscle movements and often abnormal postures and it’s important to be aware of your physical limitations. I’m extremely carful when I work out and cognizant that certain body don’t work the way they’re supposed to. I avoid putting undue stress on muscles that have involuntary movements and take notice of my positioning. I’ll email the two other people who commented about Crossfit and inform them of your comment. Hopefully, they’ll follow up with you here. Sending you my warmest wishes. Congratulations on your upcoming marriage. -Pamela-

      • Hi Monica,

        Sorry you’re going through this – especially just before your wedding! I was diagnosed about 11 months before mine and I remember being really sad that I was so busy trying to figure out how to live with a disability leading up to it that I didn’t really feel like I had the opportunity to enjoy the fun that is planning a wedding or dress shopping or all of the things that you expect to be doing.

        I’m going to start out by saying that throughout all of this – listen to your body. Learn your limitations and respect them. I’m also going to say, however, that once you know what those limitations are, then start to push at them a bit.

        While there hasn’t been a lot of research into intense exercise for individuals with dystonia (there was a study done in 2012 for patients with cervical dystonia that was really positive), there is a lot of really exciting info coming out of studies done on individuals with Parkinson’s disease. FIndings strongly point to intense exercise having neuroprotective benefits. If you google “Neil Sligar” you’ll find my inspiration to start exercising back in 2005. That said, we have dystonia, not Parkinson’s disease. We’re likely all a little bit different even from each other given there are so many different kinds of dystonia and so our experiences will also be a bit different, too.

        Some things I’ve found that really help:
        – Talk to the gym owners. Give them some literature about dystonia and ask that they inform all of the trainers on staff about dystonia, what it is and what to do in case you have a posture in the middle of class. It can happen. What you want them to do is up to you and what you need to feel better. I’ve asked that they get me an abmat if I’ve made my way to the ground (I have generalized dystonia so if I’m having postures, I can get pretty spectacular) to help me protect my head and otherwise leave me alone and don’t allow people to try to touch me. I’ll also let them know in advance if I’m not having a good dystonia day so they don’t “loudly encourage me”. Ha!
        – Control your environment as much as possible and learn your triggers. I can have postures if my concentration is broken. I always situate myself so I have a wall behind me so I limit noises and distractions. I also ask people to give me more space. While a sudden loud noise can cause me to have a posture, there seems to be enough loud noises in the gym overall to turn it all into white noise for the most part. Over time, you’ll likely figure out what you need to have a good workout.
        – If you start to have a posture, stop. Relax. Breath. Sometimes taking a few seconds to go all zen mellow can be enough to allow yourself to let it pass and then you can go back to your workout. Sometimes not.
        – Movements you do a lot of, you’ll be able to do fairly more easily if you’re having a posture, than movements you are unfamiliar with. The more the same something can be, usually the easier it is. For example, running in the back alley means something different with every footfall whereas an airsquat on the platform is the same every time.
        – Switching from one movement to another can be really, really hard. Say if you’re going from pull ups to thrusters, or deadlifts to push ups – It’s almost like the ghost of one movement bleeds into the next one. I sometimes will give myself a couple of seconds of quiet before moving to the next.
        – Some movements you may never be able to do without having problems. For me, I can’t do burpees over the ERG or laterally over a barbell. So, if those movements come up, I just sub in something else.
        – Dystonia makes for crappy proprioception. It’s a bit harder for us to figure out where we are in space. This doesn’t mean we can’t oly lift. It just might mean we’re less awesome at it than we’d like. It’s also good for us to do complex movements so work at it.
        – Don’t do box jumps if you’re having a bad dystonia day. Do step ups or box jump overs (laterally jump on and over the box). Your shins will thank you for this.
        – If you are not having a good day with the dystonia, you’ll be able to squat, deadlift and press close to your normal numbers but your snatch, clean and jerk will be way down. This is normal. Some days you just simply will not neurologically be able to do olympic lifting. That’s okay. Sub something else in.
        – Neuroplasticity is a beautiful thing. Over time, as more and more movements get drilled into you when you’re not symptomatic, the easier it will be for you to do them even if you’re symptomatic.

        Hope this helps! Feel free to ask more questions. And, as I said, we’re likely all a bit different and so my experience may well be different from yours. But, over the long term, I’ve really found CrossFit to be beneficial for me – over time I’ve definitely seen improvements in day to day life and the number of days where I’m symptomatic has reduced. Good luck with the wedding!

        Leya Moore

        Ps. Here is the gym where I’m one of the trainers: http://www.crossfitregina.com

        You can find my bio in the “about” section and a bit more about me under “regional athletes”.

  11. I’ve not been having the best week so used it as an opportunity to get some video of me weightlifting with dystonia. I’ve posted them up on my blog here:

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