Thursday, February 27, 2014

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!!!!!!!

Monday, February 24, 2014

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!

- Posted using BlogPress from my iPhone

Friday, February 21, 2014

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.

- Posted using BlogPress from my iPhone

Thursday, February 20, 2014

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.

- Posted using BlogPress from my iPhone

Saturday, February 15, 2014

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?

Wednesday, February 12, 2014

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.

Monday, February 10, 2014

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 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.
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Saturday, February 8, 2014

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 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.

- Posted using BlogPress from my iPhone

Sunday, February 2, 2014

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.