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.

10 Day Flexibility Challenge Day 1 – Basic Stretches & Warmup Workout Da...

My Daily log during Treatment and post-treatment at Plasticity Brain Centers

Click on the link below to see the changes that were made during my treatment.


Copy of my Exit Report From Plasticity Brain Center


Day 1


Testing and first treatment:


Discussed PTSD & trauma, childbirth and the immune system, stretching neck muscles is bad- confuses the brain and makes dystonia worse. Physical therapy after dystonia goes away, medications OK for sleep.


Monday night my left hip hurt and neck pulling as usual.


Day 2


Had a hard time falling asleep pain and head tremors. Left leg and glute pain.
Woke up on day 3 feeling twisted and sore. Saw improved eye movement after a second test to make sure we are on the right path.


Day 3


After treatment felt OK then had really bad dystonic posturing and pulling that evening. Diagnostics showed improvement so we are on right path. Tremors were bad and hard to eat. Muscles felt tight and sore.


Day 4


I felt better throughout the day. I was able to turn my head to the left easier for an hour or two. Still have head neck pulling tremors not as bad during the day but I had a hard time falling asleep- overthinking...felt wired.


Day 5


Feeling better as far as head pulling. Did testing in the morning and went over the results at 2:00. Saw significant improvement!  I’m so glad my husband was with me to see the results and have them explained so clearly by Dr. Antonucci. My pain is not as intense. I had two more treatments and exit review with Dr. Antonucci. Left the Center at 6:00pm and drove to Cocoa beach and was wired. Went to dinner late and I was feeling woozy. We definitely overdid it. Did not fall asleep until 3 am. I think I was anxious and overtired and the hotel bed and room was horrible. The car ride was not as bad as usual. I am also noticing more I have control over my emotions. Pain 5 out of 10.


Day 6


I was sooo tired from lack of sleep but went to the beach with Micha and the pain was not so bad. My head feels wobbly and shaky. Went to new hotel close to the airport. Found a lovely Italian restaurant and had a relaxing lunch and day. The car ride was ok....pain on left side of neck shoulder and upper arm. I was able to swim a bit with Micha and I slept well in the new  hotel room. Pain 5 out of 10.


Day 7.


I woke up groggy and tired. Headache on right side and pain on left side of neck still. Flying home today. The flight was rough for me. I had a bad headache on my right temple. Not sure if it is my usual PMS headache or from the treatment/trip and the pain got more intense in my neck and shoulders...also felt very nauseous. Got home and was able to rest but headache and pain all day. Pain 9 out of 10.


Day 8


Had to take one ambien last night because my tremors were bad and my head hurt. Woke up still feeling headache and pain but now on right side only. Feel exhausted. Tried to do falling tree. Eyes pooped out after 3x. Every time the right eye started to water. Pain 8 out of 10


Day 9


Woke up feeling a little better. Lingering headache but not nearly as severe. I got my period so that explains why I felt terrible the past few days. It's crazy how bad my dystonia flares up with pms. My insomnia is worse, pain and muscle tension is worse during those days. I usually end up taking an ambien once or twice a month on those days.
The pulling on my neck was bad all day especially walking to pick up Micha. I feel like a broken -robot/bobble-head. Pain 7 out of 10.


Day 10


I woke up feeling very sore on the right side of my neck and very tight pulling-chin to shoulder on right side when walking. Also had pain in right calf. Went to grocery store with Mike and the ride was not as bad as before and last night watched some of the hockey game and it did not make me as crazy as it usually does to watch TV. I also have noticed I have more control over my emotions these past few days. Things that I would normally start crying uncontrollably over are now tolerable. I was able to work in the garden for an hour and I washed our sheets. The only exercises I am doing at this point are the rolling log and Falling tree. I am still waiting on an email with the LB exercises on the ottoman and the specs for the bicycle wheel or a video. In the evening the head to shoulder was getting worse. Did yoga this morning and walked to pick Micha up at school. Pain 5 out of 10


Day 11


Woke up feeling a little better. Worked on compiling this daily journal/log this morning. The eye exercises went well, but my right shoulder keeps popping up to my chin, especially when I am walking. Even now as I am typing it is happening. The back of my neck is very tight and sore/right side. Today I did yoga for 20 minutes, rode my bike for 20 minutes and also walked to pick up Micha at school. Came home and made dinner and now getting MIcha his shower.  I do a lot and fight through the pain. I’m exhausted yet I have a hard time falling asleep. This is an average day. Pain 5 out of 10


DAY 12


Slept very well last night. I still have the tugging and pulling- right shoulder to chin. It feels very tight and tense yet the pain is not as bad. Ordered parts for the rotator exercise. Still having trouble walking and head bobbly- wobbly. Did 20 minutes of yoga and had my sister-in-law over for company.  Pain 5 out of 10


Day 13


Rough day. The pulling and corkscrew feeling was very strong starting in the afternoon. Morning exercises went well but later I felt the tugging and pulling starting on my way up from the falling tree exercise.  I'm trying to be mindful but when I start to feel the pulling it affects my breathing and anxiety levels. I went outside to do yoga and knit but still felt wonky. Its either chin to shoulder or head being pulled backwards pain was a 7 out of 10.


Day 14
Woke up feeling pulling and pain on right side. Corkscrew feeling from my neck down to my lower back. Right shoulder is popping up to chin. It's hard not to get anxious when this happens. Trying to be mindful. The car ride today was back to my usual twisting and head turning and the pain and pulling lasted all day. Tension in my upper arms and neck.
Pain 7 out of 10