Things That Have Helped Me (deal) with my Cervical Dystonia. Over the next 20 days I will share a tip. Success stems from repeated practice. By Linda Furiate (dystonia advocate/past support group leader & former TV show host).
Tip #1 of 20: Breathe – breathe into the spasms. Your breath may be deep or shallow depending on the severity of the movement. Breathe – i.e. oxygen is needed to fuel the muscles to bring them back into balance.
Tip #2 of 20: Relax your mind! To do this, close your eyes and follow your breath. Vary the pattern of your breathing to give the mind something (mindless) to focus on.
Tip #3 of 20: Stand facing a wall or flat surface. Gently allow your head/forehead to touch the wall – much like a sensory trick. Focus on your breath/breathing to relax the mind and body. Do this for as long or as often as you like. This is preferred to lying down all the time. This is one of my favorites. I used this technique quite often early one when my neck was at its worst. As a metaphor, I think of it as allowing me ‘to stand strong and to be supported’.
Tip #4 of 20: Change or alter your belief system to know that you are the One most responsible for healing (and relaxing) your neck/body. Reclaim your power!
In the early days of my CD I recall seeing my neurologist. I was a twisted mess and could not even sit up in the chair as he examined me. He said I was one of the worst cases of CD he had ever seen. The botox he had injected in me, wasn’t helping and I was adamant on not taking any oral meds. He said there ‘was nothing else he could do to help me’. 20 years ago alternative methods were barely known. I left his office is a state of frustration and anger. When I got home I realized at that moment, it was up to me to find a solution that empowered and healed Me! This was the beginning of a brand-new journey. I decided to no longer be the victim of circumstance and to stand up to my new normal. Any treatment for my neck would be what I determined was best for me and not ‘just what was standard protocol’. That was the moment I got my life back.
Tip #5 of 20: Tuck in your chin at all time – this helps to ease the SCM muscles and to keep the head from turning. It also takes the pressure off the back of the neck. Do not force the chin tuck. Simply relax as you follow tips 1-3.
I feel that doing the chin tuck has been the most influential movement that has allowed me to achieve the most control over my head turning. Tomorrow I share my full neck exercise regimen.
Tip #6 of 20: Spend at least 20 minutes of your day doing exercises that will relax and tone the neck muscles. I personally spend most of my day focused on suggestions that are spelled out in my STEP booklet. To request a free copy of my STEP exercise program, PM or email me at LMFuriate@gmail.com. I will send you the pdf if this link does not work file:///C:/Users/Linda%202017/AppData/Local/Microsoft/Windows/INetCache/Content.Outlook/3T1O83V1/STEP%20booklet%20for%20FB%20(002).pdf .
A few suggestions included in the STEP booklet are:
Focus on your correct body posture whether you are sitting, standing, walking or lying down.
While you are in chin tuck, drop the shoulders to further relax the upper body and neck.
Sleep mainly on your back without a pillow under your head. Use a soft pillow under your legs to take the pressure off your lower back. I also suggest a pillow on either side of your head to keep it straight – plus this works as a sensory trick.
Tuck the chin while in a lying position. Gently separate your upper teeth from your lower teeth, this will take pressure off your neck and jaw.
Focus on relaxing the eyes, as the eyes and the neck use the same muscle groups.
Be mindful that recovery take time and practice before you may be able to achieve results. It took me many months to a year to see any improvement. The key is repetitive practice. Don’t give up on yourself.
Tip #7 of 20: Practice gratitude in all aspects of your life – even for your dystonia. Be grateful for the smallest of accomplishments. I end each day recounting 10 things that I am grateful for.
Years ago, I attended a dystonia support group meeting. I recall one of the participants painfully describing with bitter hatred for how much she despised her neck due to her CD. She called it evil and somehow conveyed how she was possessed and cursed. The way she spoke, I felt as if some evil spirit was about to take over the room. I was so saddened for this woman, well knowing that her lack of acceptance and gratitude may have been a major obstacle toward her healing.
As we all know it is a challenge to live with CD, however, there is always something throughout our day to be thankful for.
Feel free to share one thing that you are thankful for today.
Today I am grateful to be able to spend my day helping my friend who is totally blind. She has a day full of meetings to help other blind people. I am grateful to have my vision that allows me to help others.
Tip #8 of 20: For pain associated with CD, consider a magnesium bath salt or spray. Use the salts on the neck in the bathtub and/or in the shower. I recommend using the magnesium spray before bedtime. This may provide you with an excellent night’s sleep.
I have found that practicing the techniques in the STEP program (tip #6) has help with my pain. For me any pain with my neck typically is related too much (abnormal) movement.
I do not sell any products although I am happy to share a link to the products that I personally use.
Tip #9 of 20: Feel free to try multiple forms of alternative healing such as PT, yoga, message, acupuncture etc. however ONLY try one at a time. The reason is you will want to know what is working best for you. Each modality may or may not show benefit depending on your body and frame of mind.
I would recommend that you also use in conjunction of any alternative treatment (or toxins) something like my STEP program, the clinic in New Mexico or Dr. Farias’ work.
Please share your thoughts on what alternative modalities have worked well for you (that does not include oral meds).
Tip #10 of 20: Follow the rule: Less is More. Stay active, walk, work out (gently), maintain your normal desires – yet keep things simple and know when to stop.
Tip #11 of 20: Do not give up! Allow yourself adequate time to heal. It often takes several months or even a year or two to find the right treatment to regain a more normal existence. Learn to accept each level of stillness as a step in the right direction yet allow for a setback. Life is a series of ebb and flows as we reach our goals. It may be in our setbacks that allows us to embark upon a new treatment option or thoughts that enhances our journey.
I always say ‘if you feel like you are at the end of your rope, start swinging. You never know how much momentum you can build up that will allow you to take an even bigger leap of faith’.
Japanese proverbs:
“Fall down seven times, stand up eight.”
“Even monkeys fall from trees.”
What is your motto in life?
Tip #12 of 20: Most of our limitations begin in the mind. Set future goals – these may be personal, professional and physical. Work toward your desires at your own pace.
I remember early on in my CD recovery. My sister asked me to be in her wedding. I was terrified to walk down the aisle with CD. I accepted her request with the mindset that I would have the physical ability to do so. With this determination plus endless hours of research and practicing techniques to help control my neck muscles, I was able to accomplish my intention and desire. I continue to use this same belief that I can accomplish anything I set my mind too.
If I really want something bad enough, CD will not get in my way. I am realistic and selective on what I choose to accomplish.
Tip #13 of 20: Reach out to a friend or family member to help them. Or help someone else in need. I work with people who are blind or have other physical limitations.
Accept that all human beings experience a level of pain and suffrage. Aid in their needs as a tool to your own emotional healing. The Universe will always give back to us in some form. Keep the circle of giving and receiving in motion.
I realize most of us need or would like help and support from non-CD people. I find that when I take the focus off me, it allows me to momentarily forget about my neck.
See who you can help today, even if it’s a simple phone call to check in on someone. You will make their day.
Tip #14 of 20: Learn to be proud of your uniqueness. There is power in numbers – make friends and socialize with others who have CD. Exchange positive and insightful thoughts. We all get what you are going through.
Allow yourself to laugh – even at yourself. I know I can look silly some days with my ‘funny’ movements. People will ask me all the time ‘did you want to say something’ (because my mouth or neck would be all twisty and moving). I’m like ‘nope, it’s just my dystonia’. They may have no clue what dystonia is, however, it makes me feel better because my ‘uniqueness’ has a name.
Tip #15 of 20: Be mindful of your own thoughts and feelings about life with dystonia. It is not your business to decide what others (family/friends/strangers) think about you or your abilities. You may encounter people who will pity you, want to save you, may discard you or simply love you.
I have found that by living up to who I am, and my abilities is when I am excepted the most.
I will let others know that I have dystonia. I feel it is important to inform people I know or meet that I have CD, especially if they see me struggling. However, it is not my job to educate them. I am as ordinary as they are, I just so happen to have a ‘twist to me’ that I cannot always control.
I love it when people ask me questions about dystonia and how it affects my life. This shows me that they have an interest in Me. Others may simply not know what to say or do. That is okay.
Tip #16 of 20: Invest in a high-quality comfortable mattress. This should include bedding/sheets that offer you a cozy feel.
If you tend to toss and turn at night and wake up sore in the morning, this is a prime indicator that you may need a new mattress. The right mattress should allow you to fall asleep within 20 minutes while preferably lying on your back (this is easier for those who do not spasm as much while lying down).
A less expensive alternative to purchasing a mattress is a memory-foam topper for your current bed.
Shop wisely. Invest in your health. Invite a friend and spend the day testing out mattresses.
Tip #17 of 20: Plan your time, plan your day, plan your life. Feel as if you can live and function with the dystonia. When the mind is occupied the body is more at ease. Wondrous things may then happen.
Plan a small event or outing, something you enjoy doing or need to do. You may amaze yourself with how great of a day you will have, physically and emotionally. Often when we take the focus of the dystonia and place it on something more meaningful, we may be blessed with a great day! Remember it is the little things in life that account for the most. Something as simple as making the bed for the day may offer a sense of accomplishment.
In my early days of CD, I remember needing to choose between shopping for food or cooking for myself as I did not have to stamina for both. I learned to schedule out my time with small tasks that allowed me to pace myself for what I needed to get done. I am thankful now I can plan my time, and pace myself days and weeks in advance.
I highly recommend that my STEP program or something similar is included in your daily plan. The only way to recover (ease the symptoms) from CD is by practice, practice, practice.
Tip #18 of 20: This is a controversial tip. I chose to not use any oral medications to help with my CD. I did try a few muscle relaxants for a couple of days early on as my doctor insisted on it (and to test this theory). I found that when my body experienced the sense of relaxation while on the drug, I felt a little better, however when the drug wore off for the day/time frame the dystonia would become more aggressive. I realized that I did not want to engage in this ‘instant gratification’ mindset and that I would apply the principles that are spelled out in my STEP program if I was to experience ‘recovery (ease) from symptoms’ versus ‘a covering of symptoms’.
This was an extremely difficult and challenging way of thinking. However, my focus was on long term results and not my immediate need. I would equate this to taking one step at a time as I worked toward my goal. Image if your desire is to become a professional dancer or sought-after public speaker. It is important to avoid those things in our path that do not serve our intention.
Personally, I tend to stay away from any substance that may have the ability to alter my brain or central nervous system as these substances adversely affected my long-term healing. This includes (but not limited to) oral meds typically prescribed for CD, alcohol, marijuana, CBD, B-Vitamins. Listen to your body and feel free to experiment to see how oral substances affect your short and long-term recovery. For some/many of you these substances have be useful, for others this may not be the case.
It takes a brave soul to go oral med-free. Experiment for yourself to see what is best. There is no wrong answer, I am just sharing my experience.
Tip #19 of 20: Seek and practice a system of Faith that resonates well with you. This may be a religion, a spiritual discipline or other form of connection. Become part of a community or two (or more) that is accepting of All.
This may be as simple as reading self-help books, spiritual books - even Tom Seaman’s Navigating Dystonia book, a 12-step program or take (free) webinars and online classes on spiritually and healing – engage in something outside of yourself that may offer you a sense of well-being and hope.
I am a firm believer that it is my strong faith and beliefs that allows me to handle any challenge that may be presented as I work through this lifetime.
OM! Namaste!
Tip #20 of 20: Dig deeper into your personality to understand what makes you “You”. This is my favorite tip as it helps to create a sacred space within self and to show you that it’s okay to “be you”.
I often hear that many of us have lost our old selves - the who we were before CD. Many of us wish to reclaim the person we once were.
I like to think in terms of making that older version of myself even better, although, initially we must understand our energy. It is important to recognize who we were so that we can develop the who we hope to become.
For fun (or seriously) take a Myers Briggs test, study your Enneagram, have your birth chart (astrology) interpreted, learn your Numerology, work with a self-help professional or have a past life reading. There are numerous options. All of these can offer insight that may lead to more self-awareness.
Cervical dystonia is a form of trauma that may affect us both physically and emotionally, no matter how the dystonia originated. My curiosity has always been in the ‘why – why this?’ (not the why me?).
I believe the process of healing is a delicate blend of the physical, spiritual and emotional.
Living with CD is not easy. I am thankful that I have learned so much about myself and my purpose over the past 23 years since developing CD. I work very hard to make myself a better version of me. It gives me great peace and comfort to know how CD has been part of the bigger plan for my life! I do not think I could do the ‘real me’ without the experience of cervical dystonia and digging deeper into my Soul. Dystonia has led me down a path to find my Truth.
Thank you all for sticking with me and reading these 20 tips. I could have a 1000 more to help us get through the day.