Dystonia Diaries

We're NOT Crazy

2018-02-13T09:22:00.004-08:00

We're NOT crazy. Our necks ARE pulling, and the tremors ARE real. Too many of us have gone undiagnosed...so, let's not let this happen to others.

Let's share all the helpful information about Cervical Dystonia we can, and guide the ones that are suffering to see a MOVEMENT DISORDER SPECIALIST.

Put Yourself First and Dystonia Second

2017-07-28T06:35:00.000-07:00

How many of us feel stuck? Can't seem to get ahead? Family, friends, and careers are effected by our unhappiness?

A Certified Professional Coach...with a degree in Psychology...can give you tools and techniques that will take from the place you are now, to the place you want to be in life. People who excel have made the "choice" to move forward.

Dystonia can have physical, mental, and emotional challenges that hold many of us back. We all have different types of Dystonia, with different challenges. I get that. I have Cervical Dystonia, and there are so many things that it's taken away from my life...and there are so many things it's added to my life. I've learned to adjust, become more creative, learn, and move forward towards a happier life that works for me. You can too! It's all about putting ourselves first and Dystonia second. I bet you never miss an opportunity to get to the doctor to treat your Dystonia, but you've allowed yourself to miss opportunities to enjoy the outdoors or meeting up with good friends because you've allowed Dystonia to be an excuse to LIVE and be HAPPY. We ALL deserve to LIVE and be HAPPY, whether we have Dystonia or not.

What if you can work on one thing, just one thing, you can change that will make your life easier/happier. What would that be? What would your life look like, feel like, after that change is made?

Life and Relationship coaching can help you identify what's blocking you, create an action plan, be by your side throughout your journey, and celebrate your achievements with you. Call for a free consultation, and start your journey today. Please note that price per session is different for Coaching someone with Dystonia. Call for free consultation and pricing today.

www.donnaleakeclc.com

Why Hire A Coach Who Has Dystonia?

2017-03-29T16:08:00.000-07:00

When I was diagnosed with Dystonia...

- I was at the point where my neck was constantly pulling and twitching.

- Every time I bent down to pick something up, my head would turn upwards to the left, and I wasn't able to see what I was reaching for.

- Using my arms/hands, to do simple things that we take for granted, was becoming impossible. The pain from my head twisting and turning had me in tears at times. These simple tasks were things like...opening the mail, cutting my food, zipping up my jacket, tying my sneakers, putting on socks, buttoning my pants...and even worse, all of these things effected me more as I was trying to do them all for my child each day.

- The anxiety that came from the embarrassment of people watching my head pull/twitch was enough to make anyone want to stay home. To this day, putting groceries or clothing by a register and reaching for my wallet can instantly cause my dystonic spasms to increase, while my heart is pounding out of my chest with anxieties that others are watching me.

- I had so many specialists tell me their thoughts of what was going on with me...I was just tense from stress, that an x-ray had shown I had a little arthritis in my neck, all I needed was an adjustment from a chiropractor, all I needed was an epidural procedure on my discs and I would be fine, etc.

- Finally a doctor was able to give me a diagnoses, and I was able to get the proper treatment. Which was Botox injections every 3 months for the rest of my life. Treatment was a success, pulls were less noticeable, and I was able to do all the simple things again without being in pain.

8 1/2 years ago I began treatment. I still have my challenges, but I am so used to living with this condition that I only notice it most when I'm stressed out or haven't done yoga/physical activity.

What's the purpose of this post? Not to tell my story over and over again, but to remind myself what I went through to get to where I am today. To remind myself that there are so many others that are still undiagnosed, still searching for a treatment that will work for them, have become depressed, have become introverted, have financial struggles, etc.

If you are someone who is suffering from Dystonia, are a caretaker for someone suffering from Dystonia, or know of someone with Dystonia please contact me for coaching. I can help you move to a happier/healthier place. I know, better than anyone else who doesn't have Dystonia, what your struggles are, what your worries are, what your pain feels like, the embarrassment from stares, and how it feels when others question your disease.

Don't wait any longer to reach out. My contact number is 631-988-4001, my email is donnaleakeclc@gmail.com I want to help!

The Benefits of Essential Oils for Dystonia

2017-01-16T14:14:00.000-08:00

Living with Dystonia is painful; emotionally, mentally, and physically. That's why it's extremely important, for all those who are suffering from Dystonia, to take care of ourselves. Botox has helped with the spasms in my neck, but my anxieties, headaches, adrenal fatigue, sinus colds/infections, etc needed immediate care.

I began researching essential oils, and immediately became overwhelmed. No one gave me answers as to how these plant/flower/root based oils can add to my health. My sister hosted a Young Living Essential Oil workshop at her house, and I became even more curious. I purchased my premium starter kit and an essential oil desk reference guide, and with the help of fellow Young Living Members and Youtube videos, I began taking better care of my health.

Since using these oils on a daily basis, I've quickly learned which oils my body responds to best. My headaches have subsided, I haven't had a cold in seven months, my mood has been elevated, my muscles are more relaxed and I don't have the aches and pains like I used to.

After doing much research, Young Living Essential Oils are the only essential oils I have been using, and will continue to use. First off, their logo is SEED to SEAL. Which means, they take the plant, root, flower, etc right to the distillery and bottle it up. They DON'T add anything to their oils...no fillers or perfumes, like most other essential oil brand do. One factor why Young Living Essential Oils may be a bit pricier than others is because it takes so many plants, roots, flowers, etc to completely fill a bottle of their essential oil.

Also, once a member of Young Living, you can get a 20% discount on future oils, discounted shipping costs, and earn money when you sign up others to become Young Living Members. You're not obligated to sell any of their products, but if you have a friend or family member who is interested and they buy a premium starter kit from you, you automatically get $50 sent from Young Living...and when they begin purchasing more oils for themselves, you receive a percentage of that sale. Which means, Young Living cuts you another check for their purchases. Need to say more? If you're looking for a way to make a good income, or side money, this is a great way to do so.

If you have dystonia and want to better your overall health, do yourself a favor and take a look at Young Living's website, peek at some of the Youtube videos from other Young Living Members, or contact me with any questions you have. I'm a believer in Young Living essential oils, and I know once you get starter, you will be too. I will be here to support you on your journey. Please note, that we are all different, so what may work for me, may not work for the next person. However, you will find that oil or oil blend that does wonders for what you're looking for it to do.

My Young Living Distributor # is 3975903, if you are ready to purchase your premium starter kit. If you have any questions, please email me at donnaleakeclc@gmail.com or call me at 631.988.4001

A Life Coach can help.

Support Groups for Dystonia

2016-01-14T06:06:00.001-08:00

What kind of a support group are you looking for? Are you a caregiver for someone suffering from Dystonia? Are you suffering from Dystonia? Are you physically capable, or comfortable, leaving your house to make a support meeting if one was available in your area...or would it be easier for you if the support group came to you?

These are the things to consider when creating a Dystonia support group. I receive emails from foundations about support groups they're holding. I have yet to attend any because of these reasons...the location, the times they hold them, and the activities they offer...and I'm one who suffers with Dystonia that's able to be present to all that they offer. What about the ones who cannot leave their homes? I've yet to receive an email stating that has a support group reaches out to those with Dystonia who can't travel, unable to sit still during workshops or participate in physical activities, or are emotionally at their wits end with their pain. Perhaps a support group that phones in, Skypes, or FaceTimes all of those who are not able to leave their home?

If you know of any support groups that are available to personally reach the ones who can't physical get out of their house, please forward any information you have, so I can share it on this blog for others to share.

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Get Out Of Your Comfort Zone

2015-02-08T12:45:00.000-08:00

We all have a comfort zone. A place where we are familiar, surrounded by a sense of security. Our comfort zone can help us stay true to who we are...staying balanced and centered...allowing us to live within our means. Sounds like a nice place to stay, doesn't it? For some, yes, but for the rest of us who want more out of life, we will have to take a step out into the uncomfortable every once in a while.

Think of a moment in your life when you stayed in your comfort zone, instead of taking a chance. What kept you in your comfort zone? Was it motivation, fear, lack of experience, or finances?

What if you did take that chance? What would your life look like today? Where would you be? Describe what you would be feeling? Who would be with you?

Dystonia can prevent us from doing things that are planned out. Most likely because we never know when our "good days" or "bad days" are going to be. By taking the opportunity to step out of our comfort zone on the "good days" and do begin doing things we got used to NOT doing...like going for a quick walk, reading or writing, visiting a friend, or inviting your family over for a visit...we will be able to explore life more and grow as a person. Dystonia is part of our life, it's not our life.

Know your comfort zone, create a list of what you want to do, and when the opportunity comes along, step out of your comfort zone and make it happen!

Sometimes The Push Is Too Hard

2015-01-25T18:16:00.000-08:00

Okay, so my last post was about needing a push every once in a while to get myself moving. Today's post is going to be about knowing when the "push" may have been a little too much.

As I walked into yoga class yesterday, I literally felt like crying. My body was aching, and the thoughts of holding some of the poses that my instructor was about to get into was not making it any better.

My body started reacting to the negative thoughts that were going through my head. "I'm tired." "I can't wait till this is over." "Why did I come to class today?" My teacher noticed and would come over and help me with some of the poses, or tell me to try a more "gentle" pose. I wanted to cry!!!! I just wanted the class to end, so I could feel the pain and just go home and deal with it on my couch.

Moments later, towards the end of the class, we were asked to do a balance pose...which I needed all my concentration in order to balance on one leg while holding my other leg up in the air. I found a spot on the wall in front of me and began to focus. Moments later, we were asked to switch to the other leg, and I began my focus once again. As I finished that pose, I felt an extreme calmness come over me. I wasn't angry, I didn't want to cry, and I wasn't hurting. I actually felt relaxed!

How was I able to go from extreme anger to complete serenity? It was my focus. As soon as I created that switch, the change occurred. By taking back my control, I was able to find balance and remain centered for the rest of the day ahead of me.

What do you focus on, when you're having an "off" day? I'd love to hear from you.

I Need A Little Push To Get Started

2015-01-24T05:59:00.001-08:00

So, I get up this morning and there's slushy snow on the ground, the sky is grey, and all I hear is the plow flying down the street. YES! I'm thinking this is an opportunity for me to stay in today....and then I turn my phone on and there's a text!

It's from my yoga instructor, telling me she cancelled the early morning class, and was wondering if I was going to make the 10:30 class instead. Ugh! What to do? What to do? My couch is calling me and it's so cozy inside, do I really want to venture out?

Then I start to thinking, yes, yes I do want to get out. Sometimes I need a little push every now and then to get me moving. Especially when my body is aching. Having my teacher reach out to me is like having my very own health coach. She's my accountable partner, who has my back!

Who or what gives you the push you need to get you moving and off the couch in days like today?

Who can you ask to be your accountable partner going forward?

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Support For Dystonia

2015-01-15T17:39:00.001-08:00

What kind of support do you want? Are you finding support just by reading articles or posts from others with Dystonia, or would you rather speak to a live person who has Dystonia, who can be a sounding board, while giving you support, encouragement, and will celebrate all of your achievements?

I have a Bachelor's in Psychology and I'm certified as a Professional Coach, who also happens to have Dystonia. I can empathize with the mental, physical, and emotional experiences you are going through. Lately I've been reading too many posts from people who are suffering from Dystonia, telling the world how depressed and hopeless they feel. My heart goes out to all of you, and that is why I've been posting about my services...with hopes of helping as many people as I can feel accepted, valued, and understand how they can make a difference to their lives and the lives around them.

Contact me to start your coaching sessions...www.donnaleakeclc.com

I coach over the phone to make it as convenient and comfortable as possible.

Who Do You Reach Out To?

2015-01-03T14:52:00.000-08:00

I had an opportunity to speak to and share some concerns to others with Dystonia. Although there are different areas of our bodies where Dystonia has taken control, the fears and concerns are all the same. It's hitting me more and more, as I'm realizing how alone many people who suffer from Dystonia, and their caretakers, are feeling.

I can speak for myself, when I say that I too don't about my everyday body aches and pains to others. I guess I'm just so used to what I'm feeling that it's just a part of my every day life, so I don't think of bringing it up in conversation when someone asks how I'm feeling. I also don't want to talk about it and upset my friends and family by telling them my true thoughts and concerns with Dystonia. In a way, I prefer Dystonia to be a battle that I face every day and not for others to battle for me. However, I do know when to turn to others when my thoughts and feelings are too much for me to handle alone. Do you?

Below are some questions for you to ask yourself, and the reason why I'm throwing these questions out to you, is because I'm finding that there are way too many who are suffering with Dystonia, or who are caretakers for others with Dystonia, who are at their wits end and feel alone, scared, depressed and angry. Creating happiness starts within ourselves. Use your voice to reach out to others who can help you live each day better than the day before.

What concerns do I have about my Dystonia?

Who do I reach out to, when I'm angry, frightened, or sad with my Dystonia?

How well do I take care of my body, to strengthen or relieve the pain I'm feeling?

What one thing can I do, every day, that will make me happy? What prevents me from doing it? How can I create a way for it to happen?

There's A Lady I See Every Week, and I Think She Has Dystonia

2014-12-18T16:54:00.002-08:00

When I was first diagnosed with Dystonia, I was determined to run every doctors, surgeons, chiropractors, acupuncturist, and physical therapy office and tell them what Dystonia is and how they can look for signs in order to diagnose the next person who complains to them about their uncontrollable spasms. As time went by, I created this blog in order to help others with Dystonia know and feel like they're not alone. I also offer life coaching for anyone with Dystonia or other medical conditions, with hopes that I can shed light into any dark areas of what they are emotionally, physically, and mentally going through. At this moment, I can honestly say that I have become completely quiet to the one person that may need to hear what I have to say, and I don't know why I'm so afraid to approach her.

Every week I see the same woman working at the local food market by our house. Her neck is twisted to one side, and she noticeably has uncontrollable spasms in her neck, jaw, and shoulders. My heart goes out to her, and I can feel my own neck and shoulder muscles begin to spasm, just by looking at her and wondering what kind of pain she must be feeling. My mind goes crazy, thinking of how I'm going to approach her and ask if she suffers from Dystonia. If she does have Dystonia, I want to share my story and tell her about the Botox treatments I receive, and how much they've helped me live a "normal" life again. As I gather my bags at the register and walk passed her, we smile at one another and I'm out the door.

What am I so afraid of? As I've gotten older, I've noticed that there are a lot of people who are private and may think that I'm being rude to call them out on something when I don't really know them that well to do so. I, on the other hand, would have LOVED to have had someone come up to me and ask me if I had ever seen a neurologist about the twisting and pain they see me in with my neck, because I may be a disease called Dystonia!!!! However, I'm not this woman, and I don't know how she will act. So, every week I give her my big smile and walk out to my car. She's always catching me peeking over to her and smiling, I bet she thinks I'm weird! lol All I know is that this is an older women, who looks like she's in pain and my heart bleeds every time I see her.

Please, if anyone has any suggestions as to how I can approach her, I will welcome them all!

Thanks for your time.

Back In The Studio

2014-11-18T06:43:00.001-08:00

I'm back in the yoga studio. Doing yoga at home by myself for too long wasn't such a good idea for me. Without someone watching and giving me direction, I found myself going from a 45 minute routine to a whopping 10 minute routine. I also found my muscles tightening and becoming painful for me throughout the day. So, I'm back in the yoga studio!!!!

The first day was rough! Lol I have been cycling all through the spring and summer months, so I thought my body was in good shape....I realized the way we move our muscles for riding are way different than how we move them in yoga!!!!! So, I'm back to square one in my class. It's all good though. I can feel my body being battered, stretched, and torn...just so it can become stronger, perhaps even stronger than before.

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Poor Diet and Dystonia

2014-10-25T08:03:00.000-07:00

The weather has been changing, here in New York, and I've stopped riding my bicycle, walking through the parks, and all the other amazing outdoor activities the warmer weather permits. I also have to add that I've been eating horribly the last two weeks. I'm talking cookies, candies, and any carbs I can get my hands on. I've noticed that my body has been reacting to my poor diet and exercise, but not enough to have me stop doing what I was doing, or start doing what I should be doing...however you want to look at it. :)

Well, today my body is yelling at me to get well! I woke up with my shoulders up to my ears from muscle spasms I must have had during the night, my tremors came back in my hands and neck...jerking motion in my neck, shaking in my hands, and twitching in my shoulder blades.

Today is a new day to start my new routine for the colder months ahead. Yoga! Hydrating! Walking! Put the carbs and sweets down and far away from my reach!!!!!!

How Do You Start Your Mornings?

2014-10-16T05:48:00.001-07:00

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2014-10-01T07:37:00.003-07:00

During Oprah's weekend, there was a speaker Rob Bell, who mentioned the importance of staying thankful and living in grace. We often question all the bad things that happen to us and carry around all the anger that WE ALLOW to come from it. Only we are responsible for what we carry with us. Too many times we blame others for what they've done to us...instead of realizing that WE allowed them to do what they've done to us.

When we simply say, "In some strange way, I am thankful for this thing I tried so hard to avoid", we create a switch within and begin thinking of why we are thankful. When we start seeing the beauty that came from it...courage, self-worth, trusting ourselves, strengths, new relationships that were formed, etc...we will begin to release that anger and move forward to the next chapter of our lives.

www.donnaleakeclc.com

Healthy Eats For Dystonia

2014-08-02T07:54:00.001-07:00

Just purchased the Veggetti and I'm having so much fun with it! It's quick and easy to use, and I'm making a lot of healthy dishes with it!

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Creating A Life You Want

2014-07-21T09:27:00.001-07:00

Creating a life you want takes work. What resources are you using to get what you want? Books? Inspirational movies? Attending motivational workshops? Exercise?

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Exercise Those Muscles When You Can

2014-07-09T10:28:00.001-07:00

When I feel good I like to take as many bike rides as I can. There are days where the muscles around areas of my neck are sore after my ride, but that will never hold me back from doing it again and again and again. The freedom I feel as I'm cycling is better than playing it safe by resting my neck on a pillow on a beautiful sunny day.

What motivates you to do the things you want, even when you may be feeling a bit sore the next day?

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Make Yourself A Priority!

2014-07-01T17:07:00.001-07:00

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Most Popular Question Asked - Will My Dystonia Get Worse?

2014-06-30T06:24:00.001-07:00

I was reading this article on the website listed below from The Dystonia Society in the UK.

http://www.ipsen.co.uk/linke.php?name=The%20Dystonia%20Society,%20UK&url=http://www.dystonia.org.uk/

Will my dystonia improve or get worse?

In many cases, if dystonia develops in childhood, particularly if it starts in the legs, it may spread to other parts of the body, and can become generalized. However, when it develops in adults, it usually confines itself to one part of the body (focal dystonia). If it spreads at all - which is unlikely - it will usually affect only one other area, usually in the nearest muscle group.

The progress of dystonia is unpredictable. The severity of symptoms can vary from day to day, and while there often is an element of overall progression, it is difficult to estimate how long this will last. Typically, a focal dystonia will progress very gradually over a five-year period, and then progress no further. Symptoms in all dystonic conditions can vary.

For some people, their dystonia may sometimes improve or disappear altogether for no apparent reason. The likelihood of a total remission of symptoms has been estimated as somewhere between one-in-ten and one-in-twenty. In some cases, the dystonia may eventually return, but in others it will disappear completely.

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My Newest Addition

2014-06-17T09:28:00.001-07:00

Love my new bike! Still loving my blue one, but this is great for riding around my neighborhood.

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Time To Get Up and Start Moving

2014-06-14T07:52:00.001-07:00

The weather is amazing out. Thinking about what I can do to enjoy every minute of it. First I'm going to clip some of my roses, put them in a vase, so they will make me smile every day!!!! What are you going to do?

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I'm Diagnosed With Dystonia, Now What?

2014-06-12T10:15:00.000-07:00

I can speak for myself when I say that the day I was diagnosed with Dystonia was both the best and scariest day of my life! There was so much confusion going on in my head. First, I didn't even know what Dystonia was, so that in itself was scary and confusing. Clients who come to me for coaching are often looking for ways to handle their confusion, sadness, and fears they are experiencing. Often they take these concerns out on family members, friends, and coworkers. I've been there, done that...and there's a better way to handle your emotions.

When you feel as if you're having a bad day...anxious, sad, or afraid...think of who you can turn to that will help you switch those feelings around and become uplifted, encouraged, and happy. I've turned to friends for laughter, and watch a lot of Joel Osteen and Joyce Meyers. These were my choices that helped me escape from negative thoughts. I also am very comfortable with being alone, sitting in my backyard, just listening to the birds and sounds around me. This was a form of meditation I used to change my thoughts and relax me.

Think of what resources you have in your life that will put a smile on your face?

Essential Oils and Dystonia

2014-06-07T05:29:00.000-07:00

I was asked if I knew anything about the effects essential oils have on Dystonia, and I honestly have to say that I never even thought of how the oils would have an effect on our muscles, when it comes to relieving any cramping or pain. If anyone has any information, please comment or email me!!!!

Rachel Burrow reached out to me about the struggles her father is going through with his Dystonia, amongst other health issues. Rachel is a distributor for Living Young Essential Oils and is interested to see if the oils can give her father any relief. Conversing back and forth, we did find some sites that gave us the names of some oils that can give some relief. I have not used or witnessed any healing or relief of muscle pain with Dystonia, so please know that I'm just passing on information for anyone else who may be interested in trying the essential oils on themselves or on a loved one suffer ending with Dystonia. I have become extremely interested and want to research more on this subject.

Here's what we've found....

Marjoram- Muscle-soothing properties help relive body and joint discomfort. May also help soothe the digestive tract and is a general relaxant. Antibacerial, anti fungal, vasodilator, lowers blood pressure, promotes intestinal peristalsis, expectorant, mucolytic. Assists in calming nerves.

Basil- Powerful antispasmodic, antiviral, antibacterial, anti-inflammatory, muscle relaxant

Helichrysum-Anticoagulant, anesthetic, antispasmodic, antiviral, liver protectant/detoxifer/stimulant, chelates chemicals and toxins, regenerates nerves

Cypress-Anti-infectious, antiviral, aphordisiac, anthelmintic, calmative (I personally don't think this one would help as much.)

Gratitude- This is a blend (Balsam Fir, Frankincense, Myrrh, Galbanum, Ylang Ylang, Rosewood). Gives feelings of being grounded and strengthened.

Oregano- Antiagin, powerful antiviral, antibacterial, anti fungal, anti parasitic, anti-inflammatory, immune stimulant

Similarities of Parkinson's and Dystonia

2014-06-04T16:04:00.001-07:00

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