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

 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

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

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?

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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

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

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

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!

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Most Popular Question Asked - Will My Dystonia Get Worse?

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

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

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?

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

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

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Enjoy TODAY!

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September Is Now Dystonia Awareness Month?

June used to be Dystonia Awareness month, but it has recently been changed to September. Why? I have no idea!

Below is a photo of the email I received of the notification of the change from DMRF. The other photo is my email I sent them to confirm it.







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Appreciating Life With Dystonia

Looking back, I can't believe all that I did before I received my Botox treatments 6 years ago...before I even knew I had Dystonia. I sometimes glance at photos and cringe as I focus on how tilted my head was. I can actually feel the pain I was in, as if it was just yesterday. What still baffles me is that not many people noticed the odd positions my neck was in. They tell me that they only knew I was in pain because my hand was always touching my neck and rubbing my neck all the time. All you Dystonians know the miracle of that "sensory trick". I still find it so amazing how that with one slight touch of my hand I can calm my muscles...well, at least for moments at a time.

Dystonia is a horrific disease that causes physical, mental and emotional pain. I want nothing more than a cure to be found, just like all of you do. There are moments I try to think of all the trauma that I've been through in my life...bumping my head, falling off a horse, car accident, etc...trying to come up of reasons why or how this could have happened to me. Then I stop and think of the little ones who developed Dystonia, who hadn't had the chance for any traumatic injuries to happen to them, why did Dystonia happen to them? I become exhausted thinking of reasons why and trying to research everything that was posted on the internet from doctors, hospitals, and clinics.

So, what do I do on a daily basis? I appreciate the life that I have. I appreciate waking up in the morning, hearing my husbands and son's voices, and having my cup of coffee.  I've learned to adjust or eliminate the people or activities that are not working for me anymore, and have learned to bring peace and joy into my life. I appreciate things that I see (faces of family, friends, blue sunny skies, and bright colors of flowers) and don't worry about the things that I can't do (certain yoga poses, lifting weights/heavy objects). I also make it a habit to push myself to do anything or everything on the days/weeks I'm feeling really good. On the days I'm not feeling too well or I'm extremely tired, I've learned to use those moments for reading or meditating.

What things do you do to make your days more comfortable, happier or exciting?

Something New Happening

A couple of months ago, while propping my head up on my pillows and watching television in bed, the muscles in the front side of my neck spammed! It was such an uncomfortable feeling, like someone was literally squeezing my neck, but not painful. As soon as I lifted my neck up and grabbed it with my hand, the spasms stopped!!!!

Some time later I was lying in bed and gave a long stretch, my head was tucked towards my chest, and the same exact thing happened. I immediately stopped, pulled my head straight up and grabbed it with my hand...and the spasm stopped.

Being conscious that this happened when I stretch or move my neck towards my chest to tight, I haven't had any spasms.  Until last night. My head was propped up on my pillows, watching television in bed, and my neck spammed so badly that I was actually in tears afterwards.  Not from the pain, but wondering why this is happening.  I wasn't stretching at all this time. This spasm was so bad that I can actually feel the muscle press against my throat. Again, not painful, just uncomfortable.

This morning the muscles in the front my neck are very sore.  I'm going to stretch and do yoga and meditation this morning.

Has anyone else had this experience, I never had the muscles in the front of my neck spasm in all the years I've had cervical dystonia.  I only get pulls from muscles on the sides of my neck and twitches.

Fusion Academy Health Fair Event

I met wonderful people last night who are all into health awareness!













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Healthy Start to any Morning

Strawberries, blueberries and carrots!


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Morning Meditation and Yoga

It's so important to love and take care of yourself, not only physically, but mentally also. Daily routines can take up so much space, so it's important to create time for you! Sometimes I'm filled with energy, and sometimes I need motivation? I create a silly little set up around my yoga mat that creates a mood for me to stay on that mat as long as I possibly can.

What motivates you to spends time alone with yourself? One of my clients said, "A cup of coffee!" She psychs herself up to walk every weekend, because she knows there's a coffee waiting for her at the coffee shop she walks to.

This is my technique...River rocks I collected from upstate while tubing, Chrystal's I bought while shopping in a village with my best friend, a candle holder from my sister that has a cute sister poem on it, and my Buddha head that made me smile at Home Goods.



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Low Bload Sugar Effects My Dystonic Tremors In My Hands

Don't look at my horrendous manicure!!!! I took this video to show you how my Dystonic tremors are effected by my low blood sugar.  I waited too long to eat this morning, and after a cup of coffee, my blood sugar dropped and the caffeine kicked in at the same time.

This is why I post a lot about picking healthier choices when it comes to foods.  There are so many things we can add or take away from our foods in order to prevent more spasms and tremors that we already have going on with Dystonia. It's not joke! Start taking your health seriously.  Less sugar, less caffeine, less carbs, and more water, vitamins and healthy eats!!!!!!!

Ditch The Tortilla!!!!

Healthier choice is to ditch the tortilla, use light sour cream and chopped turkey meat instead of beef. Put everything on a romaine leaf....and enjoy!




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Can't Wait Till Spring!

Saw this photo on Instagram and now so can't wait to bike again!!!! I miss my Blue Bonnet!


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Message From My Mornings Tea

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No Added Sugars In My Cereal

My morning start....


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Shoveling May Not Have Been A Good Idea!

I'm thinking that the redistribution of my injections from my last two visits were not the best idea. I'm feeling pain in between my shoulder blade on my right side and, again, my right shoulder was raised by spasms this morning.

Although, against my husbands wishes, I did do a lot of shoveling on our back deck about a week ago. So, I can just be sore from that. By my next treatment I will know if it was the shoveling or not.

Looks like I will be doing more yoga tonight to help with my muscles.


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What Is Up With My Shoulder?

Today I woke up and my right shoulder was so tight and pulling up towards my ear. It was so obvious that my husband noticed it. He grabbed my wrists, as my arms hung down by my sides, and pulled my arms down towards the floor. I felt the stretch and pain in my neck, and wallah....within seconds the spasm was over and my shoulders were even.


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My Morning Message From My Tea

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When People Stare

Have you ever been at a register and reached down to get your wallet and your neck starts to twist, bend, or shake up and down (as if you were nodding yes to something)?  How about when you put something on charge and you have to sign the receipt for the cashier and you're trying so hard to control your neck movements and sign the receipt before the cashier or people next to you take notice...what thoughts are going through your head at that moment?  Are you upset with the people who stared? Are you numb to it and don't even take notice anymore?  Do you leave the store feeling a bit down and sad?

I'm fortunate that my Botox treatments are doing a pretty good job in masking my dystonia.  The little twitches now and again have become such a part of my everyday being that I don't give it much thought.  However, when there are those moments when my neck decides to take a huge stretch and twitch at moments when I'm being watched, I become fully aware of my surroundings and become anxious and cannot move fast enough to make that moment end! I can actually feel my body heat up and begin to sweat.  Once the whole transaction of my purchase is completed, I walk away and erase it completely from my memory.  It happened, it ended, I moved on.  There's too much to enjoy in life than to sweat (literally) the small stuff!

How do you handle situation s when you have people wondering why you're twitching or bending involuntarily?

Bauchmann-Strauss Dystonia & Parkinson's FREE event in New York for 2014. Date to be announced....

Last year I was unable to attend this event due to a prior commitment.  This year I will hopefully be able to, once they release the event date.  What other events have you gone to that you found helpful?  I would like to hear about it. :)  Have an amazing day!  

 Patient & Caregiver Symposium

Gain a first-hand perspective on the realities of living with dystonia and Parkinson's disease. Educating and empowering patients living with these two movement disorders, The Bachmann-Strauss Dystonia & Parkinson Foundation Symposium, features top neurologists, speaking about the latest research, treatments and new discoveries, a panel featuring patients who have dystonia and/or Parkinson’s disorders, and a variety of interactive classes with complimentary therapies.  Types of classes that have been offered at our past Symposiums include Yoga, Pilates, T’ai Chi Chih, Meditation, Massage Therapy, Alexander Technique, Nutrition, Music, Movement & Dance, and Emotional Coping Strategies.  This Symposium offers the opportunity to converse and network with fellow patients and caregivers, as well as to meet pharmaceuticals representatives to talk about new treatment opportunities.

This event is free, but you must register to attend.  The date for the Dystonia & Parkinson Symposium in 2014 has not yet been set, please check back soon.

Vitamins Good For Dystonia - Livestrong website

Vitamin B-12

Vitamin B-12, cobalamin, enhances your immune system, aids in the healing process, relaxes tense muscles and helps your body produce a myelin sheath, a white substance that coats your nerve endings and protects them from toxic damage, according to Michael Zimmermann, M.D., author of “Burgerstein's Handbook of Nutrition: Micronutrients in the Prevention and Therapy of Disease.” Zimmermann adds that vitamin B-12 repairs nerve and muscle damage, supports healthy nerves, aids in cellular reproduction, lessens the effects of dystonia and improves your ability to walk, write, swallow and speak. Foods rich in vitamin B-12 include sardines, lamb, turkey, corned beef, eggs, rabbit, ready-to-eat cereals, ground beef and hard cheese.

Vitamin D

Vitamin D aids in nerve communication, boosts immune system function, relaxes tense muscles and carries blood and oxygen to your nerves and muscles, according to Judith Brown, Ph.D., author of “Every Woman's Guide to Nutrition.” Brown adds that vitamin D alleviates muscle spasms, eases muscle pain and discomfort, repairs nerve and muscle damage, aids in cellular reproduction, reduces inflammation, improves muscle tone, speech and body posture and decreases the severity of dystonia symptoms. Foods rich in vitamin D include catfish, cod liver oil, mollusks, shrimp, margarine, soy milk, fortified milk, egg, Swiss cheese and liver.

Vitamin E

Vitamin E is an antioxidant that strengthens your immune system and protects your body from viral infections, toxins, pollutants and diseases that can trigger dystonia, according to Steve Blake, Sc.D., author of “Vitamins and Minerals Demystified.” Blake adds that vitamin E repairs nerve and muscle damage, decreases inflammation, transports oxygen to your nerves and muscles and reduces dystonia symptoms such as slurred speech and muscle spasms. Foods rich in vitamin E include pine nuts, almonds, pickled green olives, spinach, sunflower seeds, broccoli and tomatoes.

Magnesium

Magnesium is a mineral that promotes muscle relaxation, improves nervous system function, eases dystonia symptoms, supports healthy nerves and muscles, regulates muscle contractions, enhances muscle tone, repairs nerve and muscle damage, reduces muscle spasms and aids in the healing process, according to Joyce Johnson, Ph.D., R.N., author of “Fluids and Electrolytes Demystified.” Foods rich in magnesium include wheat bran, oat bran, pumpkin seeds, dark chocolate, sesame seeds, flax seeds, Brazil nuts, sunflower seeds, molasses and edamame.

Sponsored Links

Why Botox?

At sometime or another, we all had wondered why we have to be the ones with Dystonia. I always took good care of myself, ate well, exercised, never smoked or did drugs. About 17 or 18 years ago I remember sitting at my desk at work and feeling my neck pull forward. Up until that very moment I was able to enjoy my life without having pain every single day in my neck and shoulders. Now I depend on Botox to keep my neck from having painful spasms.

For all of you who have asked me if I am afraid as to what the effects of Botox will be on me in the future...my answer is yes and no. The unknown is always frightening, yet, the quality of life I have now is amazing! Life is short and I want to enjoy every minute if it.

What other treatments besides Botox have you received that has shown great results? I'd like to hear about it.


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Time To Re-Distribute The Injections

My neck has been twitching more than usual in between my treatments, and I'm in so much pain while I sleep from the stiffness in my neck when I lay on my stomach and my head is turned to one side.  I've learned to sleep laying on my back or on my side in order to avoid waking up every night in pain.  My neurologist asked me if I wanted him to give me a higher dosage of Botox to help my discomfort...he also asked if I wanted a couple of injections in my right hand to take away the pain from the spasms I've been getting when I write.  The thought of giving me a higher dosage was making me sick inside.  Subconsciously I'm still fearful that one day I will become immune to the Botox and will have to go another route.  So, we decided to keep the same dosage and distribute the injections to other muscles to see if this will do the trick.  I'm still refusing to have my right arm injected, since I use my laptop more than I write.

I'm feeling really good about my decision.  I've also decided to go back to doing yoga every day.  Stretching out my muscles every morning is a must, in order for me to feel relaxed and comfortable during the day.  I had such a routine going in the past, but life happens and I started to make excuses why I didn't have time to do it anymore.  Well, I'm back baby! lol  Life is good and we have to enjoy the moments when we feel our best, and that's exactly what I'm going to do.

  

Finding Support

If you are searching blogs about Dystonia, chances are you are searching for stories or even answers to your own questions from people who are going through similar things you are. Finding comfort knowing that you are not alone is normal...and healthy!

Always know that you are not alone and if you haven't found what you are looking for on this blog, reach out to me about what it is you're looking for and perhaps I can help or lead you in another direction.

It's important that we are here for one another. Live all your days knowing that!!!!


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SAND

My new tool I use when my neck and back muscles feel tense and hurt. I pour it out in a tray and move the SAND around as I watch t.v. The sensation of the SAND on my finger tips and the look of the SAND as I move it around is mesmerizing, and I find myself feeling calm almost instantly. My muscles relax and the pain subsides. This may not be true for most people with Dystonia, but it sure is a temporary fix for me! It's sold at Brookstones. You can even purchase it online. :)

Healthy Snacks

Instead of buying yogurts that are filled with sugars that are not a healthy choice for us Dystonians. Buy plain Greek yogurt, berries or any fruit of your choice, and honey.

Warm up the fruit in microwave or in a skillet, then pour it on top of your yogurt and drizzle it with honey (optional). 😊







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Life Coaching

I am a certified professional coach and coach women on SELF-CARE; self esteem, feeling stuck, want more out of life, career changed....RELATIONSHIPS; family, friends, coworkers....and DIVORCE; before, after, who are you now, fears and concerns.

I always wanted to find a way where I can help other Dystonia sufferers speak to someone who understands what they are feeling and going through, and now I can.

I am offering a gift of discounted coaching to anyone who has Dystonia or is a caregiver to a loved one suffering from Dystonia.  Dystonia is mentally and physically draining, and it can eventually have an effect on your family, friends, and coworkers.  I want you to put all your worries and concerns aside and start thinking about living each day with a whole new attitude! I know what you're going through.   

Please contact me for details and visit my website for more information on what I offer. Since some of you may be our of state or even out of the country, I do offer coaching over the phone.

www.donnaleakeclc.com



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Stress

Stress definitely plays a part of my daily muscle spasms/twitches. It can also be good stress, such as when I have too many things on my mind that I want to get done by a certain time. Just thinking about it can cause my neck muscles to tighten.

I'm going to get good sleep tonight, and rest my muscles. Tomorrow's a new day. Looking forward to it.


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