Duchenne Parent Guide for Sanity
April 27, 2019
It is not often that we find tools and resources for parents for coping and living with Duchenne. Each one of us is consumed in finding the best therapy for our boys, getting them into the right clinical and the best clinical care. NONE of us are focusing on our own needs. What? Do we have needs? I know what you are thinking: “I don’t have time to take care of myself. I only have enough energy to work and to take care of my son/family, how dare I act selfish and think of myself – and not my child first?” Well, I am here to tell you that you have it ALL WRONG. If we (parents) go down, then the rest of the house of cards comes falling down as well. On an airplane in an emergency, we have to put on our oxygen mask on FIRST, before our children. There is a good reason. We can’t possibly help our boys, and be a dedicated spouse, parent or friend if we are completely stressed out, focusing externally before focusing internally. Without a doubt, that stress WILL manifest itself into a chronic disease, mental health disorders, divorce, anxiety, and depression. Without a doubt.
Our bodies were not created to harbor the type of stress that we exist under, and the body will fight back. If you answer YES to any of these questions, then you are in need of a dramatic lifestyle change, involving mind, body & spirit.
Do you have trouble falling asleep, staying asleep?
Do you have low energy and have a hard time either getting out of bed or feeling a slump in the afternoon?
Do you have shallow breathing?
Are you having trouble losing weight or have you gained unexplained weight?
Do you have short temper and feel a constant state of anxiety?
Do you feel like your life and the life of your child is hopeless?
Do you have chronic pain from being a caregiver?
I imagine that you, like so many, can answer yes to most of the above questions. You must understand that you ARE in complete control of your health and well-being and it is important to take action now. If you answered yes to most of the above questions, you are living in an unhealthy state and you must make dramatic lifestyle changes in order to be the best person/Mother/spouse/friend, etc. By now, I am sure most of you have heard the buzz about the following: meditation, yoga, keto, paleo, vegan diets, intermittent fasting, etc. There is so much info out there that it may be confusing, and you may think that those practices are completely out of your realm and beliefs. Numerous studies have proven that all of the above is incredibly beneficial and has meaningful health benefits. I am in no way an expert or someone who is highly educated on the subject, but allow me to share with you my experience: I am currently battling Autoimmune disorders; Graves Disease and Rheumatoid Arthritis. Autoimmune is medically thought to be a disorder where the body is registering certain proteins or hormones as invaders and begin attacking itself. Autoimmune is on the rise in first world countries, and there is a reason. The cause? Doctors will say, it’s “unknown” or “environmental triggers”, which really comes down to: what we eat, what we breathe, what we believe, and our stress level. I threw myself into research on Graves disease and natural healing and after learning about the benefits of herbs, stress management and yoga I committed myself to defeat it. We are never taught that the body is very capable of healing itself, and we live in a world where doctors treat symptoms with drugs instead of getting to the root of the problem. After taking the powerful anti-inflammatory herb, Turmeric, practicing Yoga, as well as Creative Visualization (deep breathing exercises visualizing the disease going out of your body with the exhale and goodness and healing coming in during the inhale), I went into “remission.” My doctor was surprised, but also admonished, that once you have one autoimmune disorder, you will most likely get another one. I felt better and knew that yoga would be the source of good health for the rest of my life. Right after that, my Alexander was diagnosed with Duchenne. After the devastation of processing what happened, and being able to move forward in life for a few years, a year ago, my doctor’s words rang true and I was having pain and stiffness in my joints and was unfortunately diagnosed with Rheumatoid Arthritis. I was so upset and defeated once again. I thought what a cruel trick life just played on me, to get a disease that could potentially be “crippling” causing pain, inflammation, and immobility to your joints (hands, feet, knees, etc.) which are all the things I need to be a caregiver to my son. I am 1 year into diagnosis and have taken my health very seriously trying to heal my mind, body, and spirit. I have continued on meditation, yoga, herbs, acupuncture and seeing a functional medicine doctor. I am working very hard and getting to the root of the issue, which is managing stress, exercise and healing my gut. The gut is the root of the immune system and when you have what is called a “leaky gut,” by improper diet, stress, etc. it wreaks havoc on the body and opens you up to illness and disease. Read more about GAPS here http://www.gaps.me/gaps-what-is-it.php. by Dr. Natasha Campbell-McBride. Being aware of this, and taking my health very seriously, has made a huge difference in my life and the progression of the disease.
Here are the practices that I urge you to try to gain better health and well-being:
FOOD FOR HEALTH
There are numerous documentaries that highlight the correlation between disease, depression and brain disorders in what we are eating. On Netflix, you can check out: “Food, Inc.,” “The Magic Pill” and “Heal.” FOOD IS MEDICINE. If we are eating processed foods, sugar, over consuming alcohol and lots of dairy products, then we are not feeding our bodies or our souls. Eliminating the above for even 2 weeks, you will notice a difference in your weight, your energy, your state of mind and your sleep. Again, these are all great things to eliminate from our boys’ diets as well.
“I breathe every day!” I hear you saying…well, are you breathing mindfully and deep whole breaths that bring oxygen into the bloodstream? Probably not. You are most likely shallow breathing from your chest, that is mindless. First thing in the morning you should sit and take a deep long breath from the lower belly all the way up to the chest. Breathing in for 2 counts and breathing out for 4 counts. Eventually, you should work up to breathing in for 2, holding the breath in for 4 and breathing out for 8 counts slowly and in control. You will immediately feel an overall sense of calm and well-being. This is a great thing to do a few times if you are overcome with anxiety and stress and feel your heart racing and your breath getting shallow. This will immediately lower your blood pressure and heart rate.
If you have never done Yoga, it is not “stretching” as most people believe. Yoga is an ancient practice of breathing and specific meditative series of poses that the breath directs. It is a mindful practice that forces you to be “present” and letting go of everything in your life while you are on your mat and in your safe space practicing. The effects of Yoga provide you a more toned body and provide strength and flexibility. The poses are not simply “stretching”, they require the use of every muscle in your body and provide strength training as you use the weight of your body in the poses. Yoga affects has been studied alongside the use of anti-depressants and the studies found that if practiced regularly (3-4 times per week) it reduces anxiety and depression better or equal to the myriad of anti-depressants we have on the market. Yoga is available at many yoga studios near you OR there are many fantastic online courses you can do by just googling. www.yogawithadrienne.com is a great one with many different options and level, and just 20 minutes a day can be life-changing. It will provide the muscle and core strength and flexibility you need as a caregiver and most of all it serves to protect and take care of your spine. Most people end of with back problems in life in general and as a caregiver, we are prone to back problems, carpal tunnel, tearing our shoulders, pinching our nerves in our spines, etc. Yoga is essential. It also can provide better sleep, toned muscles, weight loss with essential eating styles and offer rejuvenation and overall well-being. Yes – you have time for it. Just start with 15 min. per day.
Meditation, along with yoga is an even more extreme benefit. Just 5-10 minutes of guided meditation using an app – is an essential first thing in the morning to start your day in a calm and peaceful place of inner strength. There are numerous apps, but I love 10% happier and BREETHE. You just have to sit in a quiet and comfortable place, preferably before the rest of the house is awake, and let the teacher calmly guide you on a meditative journey for a few minutes. The benefits: less anxiety, less reactive to life’s stressors, more centered and lowers blood pressure.
Quote from the renowned Doctor and author Dr. Mark Hyman https://drhyman.com/: “If there was something you could do every day to boost your focus and productivity, feel energized, reduce stress, sleep better, maintain a positive outlook, and support whole-body health, wouldn’t you do it?”
The Mind/Body connection is very powerful. Your body follows the mind. Studies have been done that show the “Belief System” is so powerful that it can actually turn on and off genes and eradicate the disease by just our thoughts about the disease. Hence, the placebo effect. It is imperative to live in accordance with this principle and to also work with our boys with this. Despite Duchenne is a genetic disease with a negative prognosis according to doctors, it is certainly very beneficial to keep their beliefs positive and in a peak state in order for their bodies to try and heal and ameliorate, if not slow the progression of the disease and keep them in a positive state.
I believe that Duchenne parent health needs to be addressed because WE are the ones that need to be strong, healthy and positive around our boys. They will undoubtedly follow our behavior and if we are anxious and stressed out around them, that will only transfer on to their already anxiety-filled state. I urge you all to try some of the above and after 1 week, see how you feel. Please let us know who is ready to take on the CAREGIVER WELLNESS PROGRAM?
Let’s hopefully start a movement!
Blessings, for health and wellness!