Hi Everyone! I'm Ben, Loving Life Despite DDD! — Scope | Disability forum
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Hi Everyone! I'm Ben, Loving Life Despite DDD!

dowhatyoucant
dowhatyoucant Member Posts: 13 Courageous
My name is Ben and I was diagnosed with Degenerative Disc Disease back in 2013 and refused the spinal fusion surgery 2 back surgeons recommended, tried 2 chiropractors, a D.O., epidurals and dry needling. I went from struggling to stand up straight, sometimes even stand up at all, to returning to completely normal activity with increased ability thanks to learning about professional fitness education! 

Learning what proper posture actually is, how to be accurately self-aware of the body's proper positions through all types of movements, and how to specifically unlock muscles that have shortened and knotted up over time from bad posture or poor use completely changed my life. I'm here to help others who are living with disabilities like had just a few years ago learn how to incorporate stretches, self myofascial release techniques and better exercise selection into their daily routines so that between doctor's visits and physical therapy they can expedite their improvement and hopefully start to live pain free like I've been able to do!

I look forward to learning what has helped others and hopefully helping a few people change their own live along the way. Thanks for reading!

- Ben
Ben C.
CSCS/CPT/SNS

Comments

  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

    Great news and a great outlook, @dowhatyoucant. Welcome to the community! :smile:

    Community Manager
    Scope

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  • steve51
    steve51 Member Posts: 7,154 Disability Gamechanger
    Hi @dowhatyoucant

    “Welcome”

    “What a great story”

    Keep us updated if you don’t mind????

    @steve51

  • emmarenshaw
    emmarenshaw Member Posts: 711 Pioneering
    Welcome to the community @dowhatyoucant
  • Tammyjane33
    Tammyjane33 Member Posts: 761 Pioneering
    Welcome, you sound like you have got a tough life but have an amazing outlook and appear to be a strong person doing the best you can so hats off to you. I have a rare disease and I find being positive helps. Don't get me wrong we all have bad days but you're not alone. 
  • brydiedwards
    brydiedwards Member Posts: 31 Courageous
    Hi @dowhatyoucant ! Welcome. That's an amazing story, I think many can benefit from learning what our bodies need and how to properly look after the way we use our muscles, something that is often neglected by doctors when it comes to rare conditions. Look forward to hearing more :)
  • katiesymon
    katiesymon Member Posts: 59 Connected
    That is an amazing story and great to hear the positive vibes, I'm sure it is not straighforward. Your a trojan. 
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Hi @dowhatyoucant welcome to the community! Looking forward to reading more about your experiences! :)
    Disability Gamechanger - 2019
  • zakblood
    zakblood Member Posts: 419 Pioneering
    always good to hear someone who has managed to over come what professionals say can't, in same boat tbh, was diagnosed with Degenerative spinal arthritis back in 1999, also refused everything offered at the time and 4 year later tbh, had 5 sets of MRI and XRays over 20 years, all seeming to say the same, getting worse until the last set back in 2014 to 2016, which said bone fine, muscles weak and inflamed, and it's where i'm at atm, got a long road, 2 to 3 years of physio to re train the muscles to work correctly and be strong enough for me to walk, sit and stand correctly with good posture without the acute pain, it's really helpful to know there is a way out of the whole your in, so thanks for sharing 
  • zakblood
    zakblood Member Posts: 419 Pioneering
    edited June 2019
    aged 52 next month and getting my MR reply on the same day as my birthday isn't the present i wanted, do you think, and i know you can't say for 100% sure i have hope of a full recovery? as they say with physio i should be back to normal after a given long time period, they say it's like a car crash, where the bones are broken and the muscles weaken with such little use as i've had the condition and poor and bad posture and little use of any of my body for now 20 year? seems it's quite common for astronaut with long times in space in zero G etc, so my bones are now fine, but my muscles are too weak, so i still get the same amount of pain, if not more over the last few years, i thought i was getting worse, only to be told a few days a go, in fact bone wise, i'm now fine and fit and healthy, just my muscle groups alone are so very poor, haven't got the correct terms, as not had the letter back as yet on what they have signed me up to, just know it's not a over night fix, and will be hard mentally and physically, as i need, or they will show me how to do what my body / brain has forgotten.

    so any more insights are welcome dowhatyoucant thanks
  • dowhatyoucant
    dowhatyoucant Member Posts: 13 Courageous
    Thank you everyone! 

    @zakblood, absolutely, if your bones are indeed healed and healthy and it's just a matter of getting the muscles in a healthy state so they can do their job of supporting the skeleton through all of its movements, the body will take care of itself. The nerves and muscles have an extremely symbiotic relationship - when the muscles are healthy, so are the nerves, and vice versa, and the nerves are what trigger pain. Logically, healthy muscles = healthy nerves, and in turn that means a healthy skeleton. By no means would I be so naive as to say you can improve yourself to the point where 52 year old you can be every bit as young and healthy as the hypothetical 32 year old you before your problems started, but if you were severely limited in your movement and activity back then, ABSOLUTELY I think you can get yourself to a point where you feel better today than you did nearly 2 decades ago!

    Other even older people are out there every day accomplishing things just like that, it just takes serious commitment day in and day out to make small lasting changes in the imbalanced muscles, practice better posture, move more, sit less, and eat healthier. 
    Ben C.
    CSCS/CPT/SNS
  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Hi @dowhatyoucant,
    Welcome to the Community.  It is nice to meet you and thanks for sharing your story with us.  It is truly inspiring!  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • zakblood
    zakblood Member Posts: 419 Pioneering
    edited June 2019
    thanks dowhatyoucant as wasn't sure if 2 to 3 years of physio was worth the effort tbh, as one minute i'm ill, and the next along comes another doctor and say, well back in 2014 to 2016 your scan of bone came back normal, but the MRI came back still inflamed now just need to sort your muscles out, well, i did think, if that was it, why only tell me in 2019? and not back at the start, got a appointment at the GP's on Monday, so going to ask did she know and why if she did, didn't she explain it to me and get me to physio earlier? 

    so thanks for the reply
  • Tigermoth42
    Tigermoth42 Member Posts: 243 Pioneering
    edited June 2019
    @dowhatyoucant Hi Ben, welcome to this fab online community. I’ve got ddd too, lower back is bad but I’ve just been referred to an orthopaedic surgeon as a recent scan has shown severe compromise of c2-3 and 5. I feel vindicated in a way as I’ve been struggling with chronic pain for years, gradually getting worse to the extent that both arms go numb with pins and needles, headaches that aren’t improved by meds and I can’t turn my head properly. Are there any exercises that you can recommend to try and help, I know I’m getting old but this is ridiculous. I’m kinda scared about the prospect of surgery but maybe I won’t need it, just depends on what the ortho guy says. 

    Wishing you a great Wednesday! Gail x
  • dowhatyoucant
    dowhatyoucant Member Posts: 13 Courageous
    @Tigermoth42
    Hi Gail, absolutely there are a myriad of exercises that, especially when coupled with stretches of the complementary muscle groups, can create instant relief (temporary) but with consistency lead to lasting recession of chronic pain symptoms like you've described. 

    Keep in mind, the following is not within the expertise or even inventory of options for a surgeon, so don't expect any surgeon to have a qualified opinion on this, you'd want to talk to a physical therapist for that.

    My professional opinion as a strength coach and personal trainer:
    Your headaches, degenerating discs specifically in the C2-C5 vertebrae, and numbness/tingling in the arms all sound related. The nerves that would be irritated and responsible for pain signals in the arms pass by those very cervical spine vertebrae. If you look up "kyphotic posture", you'll see the common culprit for degeneration and symptoms like you're describing. That forward position of the head places an overly sharp upward angle on those C2, C3, C4 and C5 vertebrae, pinching (stenosis) the back of the discs and splaying the anterior sides. Completely aside from the steady degeneration of the discs from this uneven pressure, the muscles themselves that are supposed to be holding the head with the ears over the shoulders (so the skeleton can absorb most of the weight) day after day become accustomed to doing all the work to keep the head from falling further forward. The muscles on the front of the neck get weak and short, the muscles on the back get longer and tighter. This asymmetrical tension across the skeleton (because that's what these muscles attach to) stresses nerves, inflames tissues and understandably sends numbness and/or tingling sensations down the rest of the nerve (disruption of normal neural signal caused by inflammation and/or physical impingement) which can manifest in the shoulders, elbows, wrists and fingers (pain in the legs and feet are usually from same issue but in the joints of the lumbar and hip complex).

    A small percentage of people sometimes require surgical intervention because of arthritis or scar tissue that has built up so much that manual intervention can not overcome the physical block that these create, so they have to be removed surgically. BUT, most people can see a significant if not complete reversal of these symptoms by forcing themselves into better positions (posture), which feels completely foreign at first but just like anything, with practice, becomes the new normal (and the correct normal). It will be a tremendously smoother process if you're practicing this better posture WHILE strengthening the weaker muscles on the front side of the neck (e.g. lay on your back, practice tucking your check to your collar bone and lifting your head), the muscles around the shoulder blades (row movements, pulldowns/pullups, thoracic extensions), and stretching the muscles that have become overactive/tight like the pectorals (chest) and the upper trapezius, levator, and neck extensors (back sides of neck), you'll quickly start to feel tension melting away and if you do this daily, every single week will show slow but steady progress is fewer and fewer symptoms.

    Let me know if this is helpful!

    Ben 


    Ben C.
    CSCS/CPT/SNS
  • dowhatyoucant
    dowhatyoucant Member Posts: 13 Courageous
    tucking your *chin* to your collar bone, sorry
    Ben C.
    CSCS/CPT/SNS

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