Friday, December 30, 2016

BOTOX Update

I am into my 10th week of my first round of BOTOX injections since March of 2014. I was afraid to try BOTOX again because the injections in 2014 made me feel worse. The doctor used a higher dose that caused me to lose feeling in my left leg and arm and the pain was excruciating when I tried to walk. I literally sat on my deck on a chair for two months crying most of the day. I was convinced by Dr. George Kukurin to try the BOTOX again to help me gain more flexibility in my neck muscles so that I could do my at-home therapy without struggling so much. It has provided relief from my symptoms and pain. Before the injections my pain level on a scale of 1-10 was about a 12. Now I am averaging around an 8. When I got the injections in October I only had them inject the right side of my neck because of my fear of the last round paralyzing my left side. This time I will try both sides and pray that it will provide more mobility and relief so that I can try to get back to some normal activities and gain some independence. Every day I do yoga and stretch along with my eye movement therapy. I work very hard at my recovery and I am learning to accept that the pain is part of my life and I need to learn how to live with it instead of spending my days trying to get rid of it.  The BOTOX has helped and I am thankful to have found a doctor who is willing to listen to my concerns and has compassion for my disorder. Dr. Timothy Lichlieter is the doctor who performs the BOTOX injections at Allegheny General Hospital in Pittsburgh. He is a neurologist who specializes in movement disorders. The other neurologist I see for medications is Dr. Susan Baser also at the same practice.

Tuesday, December 20, 2016

Finding a sense of purpose when nothing makes sense.

I had therapy today and discussed my inability to accept that I have put my life on hold waiting to feel better. I need to find a way to get out more often but some days the pain is too overwhelming and holds me back. I refuse to accept that this is how my life is going to be. I spend every day so focused on my therapy and exercises trying to get better that I have no other sense of purpose.

 I've been trying to get together with a friend for lunch or go out shopping or to a local event with my family at least once a week. Even if I feel miserable I push myself to go. Usually I end up feeling exhausted and in pain by the by the end of the day but mentally it feels good to get out of the house. My goal is that by the end of January I want to try and go out alone. Take an Uber and do something just for me. I always push myself to go out if it is something for my son. Seeing Santa, his hockey games or school events.


 My therapist, my husband and I discussed how important it is to do this for myself. My new year's resolution is to break out of this prison that dystonia and I have created and get a taste of freedom and independence back. My next round of botox injections are on January 9th and I am hoping that I can get some more pain relief and going out will be something I enjoy rather than something I endure. Here's to a new year of hope and promise. 


Cheers and welcome 2017!

Sunday, December 11, 2016

New video update of my progress.


Six months after starting treatment with Dr. George Kukurin...




I am so grateful to have these videos sent to me by Dr. K to continually see my progress. It is difficult as well because it may look like I'm doing great, but there is a lot of pain and hard work that goes into this progression every day . Today my head is shaking and I feel disoriented.  I have pain. I have progress. When I see these images I cannot deny that changes are happening.  I just wish that it would happen faster and easier. I am in week nine since the Botox injections and I feel like they are starting to wear off.  I will try to keep posting more often.

Friday, December 9, 2016

Active Research Studies at UCSF for Movement Disorders



Chronic Effects of Deep Brain Stimulation on Cortical Local Field Potentials in Parkinson’s disease and Dystonia (Activa PC+S /Brain Radio)
Principal Investigator: Philip Starr, M.D., Ph.D.
Contact: Sarah Wang, Ph.D.
415-353-7885
Sarah.Wang@ucsf.edu

Colonoscopy Biopsy and Alpha-Synuclein in Premotor PD
Principal Investigators: Samuel Goldman, Ph.D. and Caroline Tanner, M.D., Ph.D.
Not enrolling

Connect PD - Using Technology to Deliver Multi-Disciplinary Care to Individuals with Parkinson’s disease in their homes
Principal Investigators: Nicholas Galifianakis, M.D., M.P.H., Caroline Tanner, M.D., Ph.D., and Maya Katz, M.D.
Contact: Kristen Dodenhoff, B.A.
415-353-1555
Kristen.Dodenhoff@ucsf.edu

Deep Brain Stimulation for Movement Disorders: Study of Patient Outcomes
Principal Investigator: Jill Ostrem, M.D.
Contact: Kristen Dodenhoff, B.A.
415-353-1555
Kristen.Dodenhoff@ucsf.edu

Deep Brain Stimulation in Area LC for Chronic Tinnitus
Principal Investigators: Paul Larson, M.D. and Steven Cheung, M.D.
Contact: Sarah Wang, Ph.D.
415-353-7885
Sarah.Wang@ucsf.edu

Effects of Deep Brain Stimulation for Parkinson’s disease on Tinnitus
Principal Investigators: Paul Larson, M.D. and Steven Cheung, M.D.
Contact: Sarah Wang, Ph.D.
415-353-7885
Sarah.Wang@ucsf.edu

Endotoxin Exposure and Risk of Parkinsonism
Principal Investigator: Caroline Tanner, M.D., Ph.D.
Not enrolling

FOUND in PPMI (Follow Up of People with Neurodegenerative Diseases)
Principal Investigators: Samuel Goldman, Ph.D. and Caroline Tanner, M.D., Ph.D.
Contact: Kathleen Comyns, M.P.H.
Kathleen.Comyns@ucsf.edu

Genetics of Movement Disorders
Principal Investigators: Marta San Luciano, M.D., M.S. and Jill Ostrem, M.D.
Contact: Lorna Beccaria, R.N.
415-353-9453
Samantha.Konz@ucsf.edu

Predictors of Cognitive Changes after Deep Brain Stimulation Lead Placement
Principal Investigators: Jill Ostrem, M.D., Ethan Brown, M.D., and Caroline R. Belkoura, Ph.D.
Contact: Sarah Wang, Ph.D.
415-353-7885
Sarah.Wang@ucsf.edu

RACE PD - Remote Access to Care, Everywhere: Using Telemedicine to Deliver Patient-Centered Care to Patients with Parkinson’s disease
Principal Investigators: Nicholas Galifianakis, M.D., M.P.H. and Caroline Tanner, M.D., Ph.D.
Contact: Michael Dodge, B.A.
415-353-8328
Michael.Dodge@ucsf.edu

Safety and Effectiveness of Cala ONE Device for Essential Tremor
Principal Investigators: William Marks, Jr., M.D., Cameron Dietiker, M.D., and Nijee Luthra, M.D., Ph.D.
Contact: Kristen Dodenhoff, B.A./Michael Dodge, B.A.
415-353-1555/415-353-8328
Kristen.Dodenhoff@ucsf.edu/Michael.Dodge@ucsf.edu

Survey of Technology-Related Impulse Control Disorders in Parkinson’s disease
Principal Investigators: Nicholas Galifianakis, M.D., M.P.H. and Erica Byrd, M.D.
Contact: Michael Dodge, B.A.
415-353-8328
Michael.Dodge@ucsf.edu

Trichloroethylene and Parkinson’s diease
Principal Investigators: Caroline Tanner, M.D., Ph.D. and Samuel Goldman, Ph.D.
Data analysis only; not enrolling

Use of Liftware Spoon Device for Non-Invasive Measurement and Reduction of Hand Tremor
Principal Investigators: Jill Ostrem, M.D. and Svjetlana Miocinovic, M.D., Ph.D.
Contact: Sarah Wang, Ph.D.
415-353-7885
Sarah.Wang@ucsf.edu

Tuesday, October 25, 2016

Botox: Bliss and Blues...

It has now been two weeks since my injections. I am feeling a great sense of relief from the pain and tremors. The past two experiences I had were so scary that I waited way too long to try this again, but I am so glad that I did. I will update in a few more weeks to see how this progresses.

Thursday, October 6, 2016

Video Update

I had my therapy appointment this morning and realized how incredibly out of control my life is. I have little to no control over what my body is doing. I cannot just get up and go anywhere. When my husband takes me out anywhere it is nice to get out, but the pain is always there and I usually do not enjoy myself very much. I cannot read books to my son anymore because my head shakes so bad. All the joy has been sucked away from my life and everything I do has now been converted to a task that I have to get through. The pain never stops and I never get a break. Sleep is the only break I get and some days I can’t wait to lay down and make it all go away. Many mornings I wake up and wish I hadn't. Some days have been OK. My son keeps me going...

Therein lies the control factor. I have found that if I take 1/2 of an ambien on nights when I cannot fall asleep due to pain or tremors it helps me so much. I am down to 6 ambien tablets and there is no refill and my neurologist is not willing to prescribe this for me.

It is so upsetting and beyond infuriating because I know what works for my body and I have tried every alternative therapy and supplement out there. If they worked I would most definitely be using them and not begging like a pathetic fool for ambien. I have tried the trazodone and carbidoba levodopa that she gave me and it did not work. I am going in for Botox on Monday the 10th. It has been almost a year and a half since I last tried Botox and my last experience was not a good one. Withing two weeks of the injections I could not feel my left foot. It was dragging when I walked and my head was slumped over to the right. Pulling and twisting. I could not lift my hands to my head to shampoo my hair. My husband had to wash and brush my hair for me. The pain was excruciating. My first round of injections that I had before that happened went pretty well compared to that experience. Unfortunately, it only provided minimal relief from my pain and symptoms.

Sooo...my apprehension in trying the Botox again is justified but I am in so much pain and this is a different doctor so I am taking a leap of faith and hoping that the third time is the charm and will provide some relief.

Below is a video update.



Thursday, September 29, 2016

Therapy-Round One. My Dystonia Animal Analogy

ex·tinct
adjective

  • (of a species, family, or other larger group) having no living members.
  • "trilobites and dinosaurs are extinct"

  • synonyms: vanished, lost, died out, no longer existing, no longer extant, wiped out, destroyed, gone, "an extinct species"


So I started "talk" therapy last week because I have finally reached a point where I need to stop fighting and being angry with dystonia. I need to learn live with it instead of spending every day trying to get rid of it. I need to learn coping skills and how to get through the really bad days without dark thoughts clouding my mind. I need a professional so that I can unburden my friends and family who so desperately want to help me but don't know how or what to do.

I was talking with my therapist today and she asked me if I could describe dystonia as if it were an animal. I told her that I have described how dystonia feels in my blog and to friends as my muscles have turned into serpents coiling under my skin. That was not the answer she was looking for. She did not want how it physically feels, but mentally. I asked her to elaborate. She explained that she sees dystonia as a giant grizzly bear in the room snarling and growling at me and constantly on the attack.

That made me think for a minute...

Then I had a clear picture of how it felt. To me, my dystonia is a giant woolly mammoth that will not budge. It just stands there not noticing me trying with all my might to push it away. No matter how hard I try to punch, kick, scream and violently get rid of the mammoth it ignores me and could care less. It is silent and so huge, SO BIG, that it takes up every ounce of space in my life and never leaves me alone. It is overwhelming. It is extinct and and that is exactly how I feel. Extinct. 

Saturday, September 17, 2016

Another perfect song for Dystonia....OK GO


OK Go - Upside Down & Inside Out


Lyrics:

Upside down and inside out 
And you can feel it 
Upside down and inside out 

And you can feel it, feel it 

Don't know where your eyes are
But they're not doing what you said
Don't know where your mind is baby
But you're better off without it

Inside down and upside out
And you can feel it
Don't stop, can't stop
It's like an airplane going down

I wish I had said the things
You thought that I had said
Gravity's just a habit
That you're pretty sure you can break

So when you met the new you
Were you scared, were you cold, were you kind?
Yeah when you met the new you
Did someone die inside?

Don't stop, can't stop
It's like a freight train
Don't stop, can't stop
It's like an airplane going down

Don't know where your eyes are
But they're not doing what you said
Don't know where your mind is baby
But you're better off without it

Looks like it's time to decide
Are you here, are you now, is this it?
All of those selves that you tried
Wasn't one of them good enough?

'Cause you're upside down and inside out
And you can feel it
Inside down and upside out
And you can feel it, feel it

Don't stop, can't stop
It's like a freight train
Don't stop, can't stop
Until you feel it going down

I wish I had said the things
You thought that I had said
Gravity's just a habit
That you're pretty sure you can break

Upside down and inside out
And you can feel it
Don't stop, can't stop
Until you feel it going down

Upside down and inside out
And you can feel it
Don't stop, can't stop
Until you feel it going down

Dr Kukurin: Theory and application of the Tone Pacer APP


This video suggests the science behind the Tone Pacer APP. It explains the theory of application for vestibular rehab. The Tone Pacer APP can be downloaded from the following websites.

https://itunes.apple.com/us/app/tone-...

Saturday, September 10, 2016

Reflections and Guidance on the Cultivation of Mindfulness Jon Kabat Zinn, PhD



These videos by Jon Kabat Zinn are so enlightening and helpful. 




I have been trying to deal with my pain by practicing mindfulness. It is so easy to let the pain swallow you up and make you blind to what is happening in the moment. My emotions can sometimes lead me into such a state of anxiety, panic and depression so deep that I need a way to just let it all go. 

I have a long way to go but these are worth sharing and I hope you find peace as well. 


Jon Kabat-Zinn is Professor of Medicine Emeritus and creator of the Stress Reduction Clinic and the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School.

Reflections and Guidance on the Cultivation of Mindfulness Jon Kabat Zinn, PhD



These videos by Jon Kabat Zinn are so enlightening and helpful. 




I have been trying to deal with my pain by practicing mindfulness. It is so easy to let the pain swallow you up and make you blind to what is happening in the moment. My emotions can sometimes lead me into such a state of anxiety, panic and depression so deep that I need a way to just let it all go. 

I have a long way to go but these are worth sharing and I hope you find peace as well. 


Jon Kabat-Zinn is Professor of Medicine Emeritus and creator of the Stress Reduction Clinic and the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School.

Monday, September 5, 2016

Update...

So it's been a while since I posted an update on how I am feeling and my progress.

Here we go...


Since starting my treatment with Dr. Kukurin the last week of June I have made tremendous progress as far as my head's range of motion. I have had a few days where the pain on a scale of one to ten was around a 7 but never below that number. Most days the pain averages about an 8. My dystonia is severe and I know that it will take a lot of work and physical and mental strength to get through this. I am hopeful that this treatment will work and keep progressing, but I have many days where I doubt that it will work at all. It is hard to feel hope when you are in so much pain. Thankfully Dr. K. is good about taking videos and tracking my progress. On days when I feel really awful I watch the videos and they give me hope. Things are changing and it is going to take time. I just hate not knowing how long....


I do many at-home therapies including targeting with lasers to activate my left brain and decoupling exercises. He also incorporated the "fencing reflex" into my exercises and that has given me the most success (in my opinion) as far as turning my head to the left again.


I keep a daily journal of my exercises, how I am feeling and the pain scales. Since we are now creating more movement, I am now using muscles that have been stuck for almost two years and it is excruciating. I take Baclofen 2-3 times a day and one klonopin at night. Sometimes I take 600 mg ibuprofen. I tried making a turmeric paste and other natural pain relievers. Right now not much is helping except my cervical ice pack. I am icing my neck all day long.

Sleep has been extremely difficult due to the tremors and pain. I feel worse when I lay down. I occasionally take 1/2 ambien but it is a fickle drug for me. Some nights it works great and others I am up 2-3 times. My New Neurologist had me try carbidoba levodopa and all that did was make me feel nauseated and disoriented. I gave it 5 weeks. She also gave me trazodone for sleep and it does not work for me. It makes me feel drugged and totally f'd-up but not sleepy. I am considering trying Botox one more time. I am so desperate for relief.

 I recently contacted my insurance company to seek mental health assistance to help me cope with my diagnosis and find ways to release some of my anger and emotional distress. It is a vicious cycle....I feel the pain, I tense up.  I tense up and get more pain. Then I start to freak out and drive everyone nuts-mostly myself.  This disease consumes you.  On most days it swallows you up and makes you blind with pain. I have called a suicide hotline twice to help me get through the days where the pain was so bad I wanted it to end. I do NOT want to die-I just want the pain to end. Thank goodness for my little boy-he keeps me fighting. I am sure my family and friends need a break from this saga as well, so seeking a professional is long overdue. 


There is so much more to share but I am exhausted and sitting hurts. Typing hurts. My left arm is tingling and my left hand is going numb. It is time to stop. For now...


Sunday, August 21, 2016

Thursday, July 7, 2016

I am so blessed to be working with Dr. Kukurin




The last week of June 2016 I started working with Dr. George Kukurin to help me try to manage my dystonic symptoms and continue my post care after my visit to Plasticity Brain Center in Orlando, Florida. Unfortunately, the progress we made that week in Florida did not stick with the at-home therapy and I had to seek treatment here in Pittsburgh. I have a severe case of cervical dystonia and I need a more aggressive approach. I am truly so grateful and fortunate to have Dr. Kukurin here in my hometown to attempt to help me get my dystonia and my life under control. 


By having him work with me once every two weeks we can change my at-home therapy and exercises as my body is changing and readjusting to different movements and stimulation. It has not been easy. The pain is excruciating and there are days when I just want to throw in the towel, but I am a hard-headed gal and I want nothing more than to manage this dreadful disorder and get my life back to some kind of "normal".


Here are my personal videos that he has taken since we started working together. 









Monday, May 23, 2016

PMS, Marijuana and Dystonia. The ups and downs of being a Dystonic woman.

 I am now 48 years old and have been experiencing major perimenopausal and PMS symptoms and it always seems to make my dystonia flare up. I feel like I get one week a month where my symptoms of dystonia are not as extreme. Since dystonia already causes muscle cramps and anxiety I have a full-on meltdown every month. I feel suicidal, the pain gets worse, I feel panic, anxiety and exhaustion. I'm miserable and short-tempered. Having dystonia already makes you feel possessed but when it's that time of the month-look out. I tried to see if there was any research done on PMS and perimenopause and dystonia and only found a few articles and research papers online. The text below is from Web MD.


Perimenopause, which means "around menopause," refers to the 2 to 8 years of changing hormone levels and related symptoms that lead up to menopause. The most common sign of perimenopause is longer, often irregular menstrual cycles that are caused by hormonal ups and downs.
Most women start perimenopause between ages 39 and 51. Some women begin to notice menstrual changes and premenstrual syndrome (PMS) symptoms in their late 30s when hormones begin to fluctuate and fertility naturally declines. Other women don't notice perimenopausal changes until their late 40s.

 Perimenopause is a time of unpredictability. Menstrual and hormone-related symptoms are different for every woman. Some notice few or no changes. And others have severe symptoms that disrupt their sleep and daily lives. As during the teen years, irregular cycles can lead to heavy menstrual bleeding. 


Other common symptoms include mild to severe hot flashesinsomnia, cloudy thinking, headachesheart palpitations, mood swings, irritability, depression, and anxiety. Some of these symptoms can also be related to aging and other life changes.



The past few weeks have been rough with all of the changes in my therapy. I have been experiencing more pain the past two weeks (coincidentally my PMS time) and my dystonia seemed to be flaring up. I have a friend that gave me some marijuana to try and I took one puff and it was great for about four hours. I was actually smiling while watching my son play in the yard instead of trying to contort my body into different positions trying to get comfortable. I ate a whole bag of gluten-free crackers. Then I felt queasy... and then it wore off. It did help me feel more relaxed and not as amped up. It also eased the pain. I do not enjoy the taste in my mouth and the smoking aspect of it but it was worth trying. It would be wonderful to have the medical marijuana available for dystonia. 

Here are some links I have found to recent studies on medical marijuana and dystonia.





Thursday, May 19, 2016

U2 - Bad. My Song for Dystonia




If I were to choose a song for dystonia... this would be it.

Lyrics...
If you twist and turn away
If you tear yourself in two again
If I could, yes I would
If I could, I would
Let it go
Surrender
Dislocate
If I could throw this lifeless lifeline to the wind
Leave this heart of clay
See you walk, walk away
Into the night
And through the rain
Into the half-light
And through the flame
If I could through myself
Set your spirit free, I'd lead your heart away
See you break, break away
Into the light
And to the day
Ooh, ooh, ooh, ooh
Ooh, ooh, ooh, ooh
To let it go
And so to fade away
To let it go
And so, fade away
Wide awake
I'm wide awake
Wide awake
I'm not sleeping
Oh, no, no, no
If you should ask then maybe they'd
Tell you what I would say
True colors fly in blue and black
Bruised silken sky and burning flag
Colors crash, collide in bloodshot eyes
Ooh, ooh, ooh, ooh, ooh, ooh
If I could, you know I would, if I could, I would
Let it go
This desperation
Dislocation
Separation, condemnation
Revelation in temptation
Isolation, desolation
Let it go
And so fade away
To let it go
And so fade away
To let it go
Oh now, and so to fade away
I'm wide awake
I'm wide awake
Wide awake
I'm not sleeping
Oh, no, no, no

Wednesday, May 18, 2016

Reflexology and Dystonia. A do-it-yourself guide to reflexology.

Reflexology
Reflexology involves applying pressure to the feet and hands. The application of pressure to parts of the feet or the hands effect corresponding parts of the body through reflex zones and meridian points. Tensions can be felt though this is usually a pleasant sensation for the client. It can be used for general aches and pains, stress-related problems and anxiety and depression. 
I saw where people are using clothespins on pressure points on their ears and thought I'd try it out. It also works on your hands and feet as well. (If you have small feet and hands) I've read a few blogs where people have tried reflexology and said it helps with pain relief. I told my doctor that I would rub elephant poop on my face if it would ease the pain... so why not try some clothespins to start?




Ear Reflexology

Although many people are familiar with reflexology dealing with the feet and hands, not as many people know that similar pressure points can be found in the ear as well. Stimulating these points has been known to relieve pain throughout the body.
You can take a look at this reflexology ear-map to see the points you need to stimulate in order to relieve pain from the corresponding body parts.


                        















How to Do Hand Reflexology on Yourself | Reflexology

Saturday, May 14, 2016

A Good Day with Dystonia is...????

Waking up and not feeling a sense of dread. Feeling hopeful.

Falling asleep easily and sleeping through the night.

A phone call from a friend, or two and not complaining, crying or mentioning dystonia...Just having a normal conversation. It's almost impossible.

Feeling strong and empowered while doing my yoga stretches and not crying.

Remembering to be mindful and breathe deeply....

Laughing or smiling. That does not happen enough. I'm trying to watch one episode a day of a comedy. Currently VEEP. It's awesome.

Making silly faces even when you don't feel very silly.

Walking without losing myself in my thoughts. Looking at the sky and the flowers and trees. 

Feeling thankful and grateful that I can walk to pick up my son at school.

Cooking a meal.

Folding laundry.

No panic or anxiety attacks.

A hot shower.

Focusing on what I can do instead of what I can no longer do.

Praying for a better tomorrow.

Please share your thoughts and what makes your days better...


Tuesday, May 10, 2016

A better understanding about life with dystonia...Written by guest Blogger Tom Seaman


Unless you live with dystonia (or any other chronic condition), it is very hard to understand the physical, mental, and emotional pain. For some people, dystonia permeates every single part of their lives, demanding so much of their attention that it can be the only thing they think about. Their symptoms never stop long enough for them to get a break.

This is very hard to comprehend for a lot of people. It certainly was for me until I developed dystonia over 15 years ago. Prior to dystonia, life was easy. Dystonia has challenged me like nothing ever before and given me new perspective about many things.

My hope is that this video and article will give others a different perspective and understanding by learning what dystonia feels like and how it affects the way we live. This is so important because better understanding fosters happier, healthier relationships.




As you can see in this video that describes what dystonia is and how it feels, it is not a fun disorder to live with by any stretch of the imagination. Take one of the examples I give about a charley horse. Imagine what your life would be like if you had a charley horse that never went away. It is almost unfathomable, but this is what dystonia feels like for so many of us. Is it any wonder some of us may not be the same person we were before dystonia entered our lives? Chronic pain can change everything.

Many of us have had to completely rearrange our lives to suit the demands of this disorder. We know that this is not easy on you either, so we want to help you understand us as well as possible so we don’t miss out on all the fun times that can still be had.


If you could live in our shoes for just one day, this is what I believe you will learn about life with dystonia and most every other chronic illness:

We are still worthwhile human beings. We still want to enjoy work, family, friends and leisure activities, but feel stuck inside a body over which we have little to no control, keeping some of that out of reach. Doctor’s appointments, treatments, medications, the rest needed to function, anger, worry, frustration, and fear are part of our everyday lives.

Making plans is often uncomfortable because we may not be feeling up to following through. Sometimes driving is difficult. We have also become sensitive to certain stimuli, such as bright lights, noises, crowds, and certain smells, so we carefully pick and choose our activities.

We may not know how well we will feel each day, let alone hour to hour some days. There are days when we can do more than other days, but just because we did something one day doesn’t mean we can do it again the next.

It’s frustrating dealing with people’s expectation that we get better faster, get over it already and act as though we are cured when our physical symptoms are unseen or after we get a treatment, most of which just mask our symptoms at best. We ask for your patience.

When we say we are fine, it doesn’t mean we aren’t experiencing pain or discomfort. Sometimes words are not adequate to describe how we are feeling. We attempt to hide our symptoms to avoid being a bother and to try and forget. We desperately want to feel “normal.”

The kind of pain we experience has forced us to adopt coping mechanisms that don’t necessarily reflect our real level of discomfort. When we say we are in pain, it’s often worse than usual; much of the time we are just coping and trying to sound happy and look normal.

“Getting out and doing things” doesn’t make the pain vanish and can sometimes worsen our symptoms. If we were capable of “getting on with things,” we would. We are constantly striving to improve and do the right things to manage our symptoms so we can get out and do things more.

Sometimes we hear others say, “You just need to push yourself more; try harder.” It may be hard to read how we feel on our face or in our body language, but we push ourselves all the time - sometimes too much and we pay for it later with worse symptoms. Finding balance is one of our greatest challenges. Some days we do nothing but push just to get through the day.

Each day has to be taken as it comes. We have to mentally prepare and carefully consider if an activity is going to cause more symptoms. This can lead to a great deal of fear and anxiety because we never really know how much our body is going to cooperate. “Making a day of things” means something different to us than it once did.

It’s hard for us to sit on the sidelines and we feel deprived when people stop asking us to join in activities. When we are physically and mentally able, we will always say “yes,” so please give us that opportunity.

If listening to the details of our condition makes you uncomfortable for a short while, consider this: what is your short-term discomfort of lending an ear compared to the long-term, chronic discomfort of a friend or loved one? Talking about dystonia is one of our most important coping tools. Denying us this survival mechanism makes a hard day even harder, but bringing it up on our own has become tiring. However, we rarely exhaust of answering questions. We love it when someone takes the time to ask about our condition. Efforts to understand makes us feel valued.

This is just a short list of things that many of us with dystonia live with daily. Since you can’t actually live in our body for a day to see what it feels like, I hope this video and article helps you better understand how we feel physically, mentally, and emotionally, and why we live the way we do. Dystonia is sometimes difficult for even us to understand, so let’s work together to figure things out and make the very best of our lives!

Tom Seaman is a dystonia awareness advocate and certified professional life coach in the area of health and wellness. He is also the author of the book, Diagnosis Dystonia: Navigating the Journey). 

To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter @dystoniabook1.

Tuesday, May 3, 2016

How your movements can heal your brain | Joaquin Farias | TEDxNapoli



Can certain neurological conditions make us forget how to move? In this talk Dr. Farias explains how is possible to awaken silent neural pathways in the brain, bringing lost movements, emotions and memories back to life.

Joaquin Farias is the director of the Neuroplastic Training Institute Toronto and researcher at the University of Toronto. Since 1996, He has been working on providing effective alternative and complementary care for patients affected by Dystonia and Parkinsons' Disease by pioneering new theories on neuroplasticity induced by movement therapy.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx

Monday, May 2, 2016

Intertwined. How to induce neuroplasticity. A new approach to rehabilitating dystonias


Dr.Joaquín Farias is a leading specialist in neuropsychological rehabilitation in focal dystonias, biomechanist, ergonomist, psychosociologist, musician, martial arts instructor, shiatsu therapist, traveller, researcher and advocate for a patients's right to receive the least aggressive treatment available. 


He believes that rehabilitation experiences are not reproducible because each person is unique and different and that life doesn't repeat itself.


He believes in the humanization of science and in the integration of all disciplines because the patient lives in a world that cannot be divided.

He believes that patients are not just subjects, but are people, and when a life is reduced to a clinical history, many times the most important facets of the person are overlooked.

Purchase a copy of  Intertwined HERE.