Blogs - WEGO Health

Genetic Counseling

Here on WEGO Health, we do our best to not only share what conversations are going on in our other health communities but we also share tips on how to encourage the best health practices in our communities. Some tips of encouragement are easy, tell others to: eat healthy, get lots of rest, listen to your body, ask your doctor questions, etc. In fact, it is pretty easy to encourage members in your online communities advice when it's been proven over and over. But how do you react when members… Continue

Added by amanda on November 17, 2009 at 5:39pm — No Comments

Migraine leaders - let's talk about Primary Stabbing Headache and connecting patients

Not all Migraine related discussions are found within the Migraine group. Sometimes a patient posts something that relates to Migraineurs in another area of WEGO Health called the General Forum. Lately there has been an ongoing discussion re: a question posted by a Health Activist in the Dystonia community who was looking for answers to a frightening p… Continue

Added by Ellen S on October 24, 2009 at 10:30pm — No Comments

Since I've Been Gone ~ An Update On Me & My Dystonia

If I had to rate the quality of my life on a scale of 1 to 10 now compared to 9 months ago, I would say it's an 8 vs. a 2 or 3 back then. And although I cannot pin point just one certian thing that has made the difference and really that's because I feel it's been a combination of changes in my life. Today my dystonia continues to progress. My stomache muscles now spasm on at least a weekly basis, a few years ago when they frist became involved they would only spasm when unloading my groceries… Continue

Added by Robin Wood on October 19, 2009 at 6:16pm — 4 Comments

I was going to swim... but I decided to blog instead Re:dystonia awareness

There are plenty of places I could have written this blog, but I decided to post it here because WEGO seems to be the most advocacy focused site I participate in. Over the past month I have been getting a lot of questions about why I have been backing off from dystonia. At first I ignored the question. It seemed selfish for everyone else to be asking me why I dont dedicate my time to talking about my aches and pains anymore! I mean how was I suppose to take care of my family, myself and my sani… Continue

Added by Jenn on September 11, 2009 at 9:21am — 9 Comments

Invisible Illness Week meme - my answers to 30 tough questions

Next week is Invisible Illness Week, and I decided to go ahead and join in on the meme this year. You can help spread the word about IIW too! 30 Things About My Invisible Illness You May Not Know 1. The illness I live with is: Migraine/headache, Dystonia, Autoimmunity 2. I was diagnosed with it in the year:...depends on the condition - first Dx was in high school 3. But I had symptoms since:early childhood 4. The biggest adjustment I’ve had to make is:making peac… Continue

Added by Ellen S on September 10, 2009 at 12:47pm — 2 Comments

An Open Letter To BEKA

Beka, Frist I want to say THANK YOU for all that you have done for all of us who suffer this dreaded condition. Of all the orgs and non profits out there c4d and YOU are truely without a doubt the one that have made the biggest impact in my life, YOU have taught me the most and have shown BY FAR the most compassion. YOU are friend to ALL and I've got to say; YOU WILL BE MISSED !!! Although I realize you will still be around :) Secondly; KUDOS to you for doing this for YOURSELF and persueing ot… Continue

Added by Robin Wood on September 4, 2009 at 10:42am — 1 Comment

Been a long time

Rather than post a bunch of stuff here, suffice to say I updated "My Profile" to include current goings-on. One amazing thing; since I went to the Neurologist for the "new" cervical Dystonia, I was scheduled for the earliest appointment for EMG-guided Botox -Sept. 10, 2009 - 7 days after I will leave the state! I called every single morning to check for cancellations, to no avail. Then, last Friday, about 3:30 in the afternoon I got a call. Caller ID said it was the Neurologist. I could not bre… Continue

Added by CDavidEricson on August 10, 2009 at 6:52am — No Comments

Brain pathways, brain trauma - a new Migraine study

St. Louis University has announced it is beginning to recruit patients to investigate the connection between Traumatic Brain Injury (TBI) and Post Traumatic Stress Disorders (PTSD) and the physical connections within the brain. As I understand the proposed study, the idea seems to be that an injury may create very minor changes in the anatomy/geography of our brains. Symptoms are widely varied but may include everything from Migraine to nausea, dizziness, newly occurring Epilepsy or even Dystoni… Continue

Added by Ellen S on August 9, 2009 at 8:30pm — 1 Comment

Abnormal brain circuits may prevent symptoms in Dystonia, Migraine

We know there is a genetic component to Dystonia. We know there is a genetic component to Migraine. Why then, do some people have the genetic errors encoded in their DNA for these neurological disorders, yet never show symptoms? A common presumption is the description of Variable Penetrance, but until now, we had no actual idea how... "..many diseases can be triggered by a single gene, but the e… Continue

Added by Ellen S on August 9, 2009 at 8:00pm — 2 Comments

Stump The Doc Day

After about six months of taking meds and adding more to the mix to try and control my spams I decided to go to another Neurologist to see if another set of eyes might see things differently or have different views on the medication I am on so here is my tale to tell :-) I go to the office I was referred to by a trusted co-worker who said the doctor had excellent "bedside\listening" manner. Apparently the office had tried to get in touch with me (no, I do not answer my cell when I do not recogn… Continue

Added by lissamel on July 30, 2009 at 11:30pm — 2 Comments

Booklets I Am Working On (Update) "Overwhelmed by the Storms?" Published

I have been so blessed by God though the Dystonia that He has given me. It is my desire to share the positive blessing that can come with a relationship with God in spite of chronic illness. To do this I have written several small booklets. I am no expert on God or Dystonia. My work with churches started in ninth grade where I worked with inner city kids in Louisville, Ky. In my third year of Bible College I began Pastoring New Hope Baptist Church in Crestwood, Ky. After seven years as Sr. Pasto… Continue

Added by RevWagner on July 27, 2009 at 6:46am — 2 Comments

this precious, precious thing

this precious, precious thing how light it is how heavy it can be this precious, precious thing how dark it is how hard it can be this precious, precious thing how forgiving it is how horrible it can be this precious, precious thing how joyful it is how dreadful it can be this precious, precious thing how beautiful it is how ugly it can be this precious, precious thing you wounder what it might be for it is life life of our world the animals the plants the people cannot have beauty withou… Continue

Added by lissamel on June 30, 2009 at 9:34pm — 1 Comment

where did i go

where have i gone i look around trying to see where have i gone for all i see is a mother and a wife where have i gone i cannot see i know i have lost something vital like an organ that is important oh, my heart, my soul, my name how do i find it again this important piece of myself that has long been gone these past few years looking hard looking deep i think i see a glimmer or a shadow of what i seek hope is on the horizon no matter how the journey is long and steep hope is in the stars… Continue

Added by lissamel on June 30, 2009 at 9:21pm — 3 Comments

dont care

stuck in a loop not caring house is a mess late to work children breaking the rules dont care not caring feels bad where has the light gone gotta get up dont care gotta get moving find a reason to care about the world find a reason to find the light from a world that has grown dark gotta learn to care again learn to accept learn to give up the bad to see the good gotta learn to find the will to fight for what is within to see the potential of what can become gotta learn gotta see gotta ca… Continue

Added by lissamel on June 30, 2009 at 12:00pm — 2 Comments

Is a disabilty a friendship fatality?

When I was in junior high, I read a book about a girl who following an accident lost her hearing. It was the classic teen drama. A popular 15 year old, with all the right friends, and all the right clothes with the perfect life. Then one day the unthinkable happens: she gets sick; really sick. At first her friends are there for her. Bringing her cards and candies and keeping her up to date on the latest school drama. But after a few months she doesnt get better. The girl is permanently deaf. Her… Continue

Added by Jenn on June 18, 2009 at 12:00am — 3 Comments

ABC News spotlights Dopa-responsive Dystonia, and a persistent mom

When I saw the teaser for the ABC News story this afternoon, I held my breath. A persistent mom defies the doctors to find a cure for her son. Could it be Dopa-responsive dystonia? It sounds right. Looks right. For me, a patient with my own dramatic story of Dystonia that responds to dopamine, it felt right to hope for such a victory. I waited to hear the story, held my breath, and erupted into silent tears… Continue

Added by Ellen S on June 9, 2009 at 7:30pm — 6 Comments

My Jouney With Dystonia

In 2001 after being a pastor for seven years I began to have problems with my voice. I did not realize that I was in the beginning stages of dystonia. God led us to move to Michigan and to become members of Beth Haven Baptist Church. I worked in the office supply business, and volunteered at the Church. I continued to have some strange problems that got progressively worse. In February of 2006 the problems progressed so that my driving ability was affected. I was laid off and began receiving une… Continue

Added by RevWagner on May 31, 2009 at 7:35am — 3 Comments

Dystonia, Dr, balance, sprained ankle

Hello All, I haven't been on for awhile. Fell and sprained my ankle, its getting better. Made an appointment with a Dr in Philly that Rogers Hartman gave me. I could only get in to see a nurse practicioner but I figure if I can get into their system then I can get into to see one of the doctors. I live in a rural area and I also made an appointment with my local neurologist can't get into see him until August. I am going to Philly in June. I know my dystonia is only mild but I also want them to… Continue

Added by Lori on May 29, 2009 at 9:00am — 3 Comments

True, simple, brief, beginner Tai Chi for Chronic conditions

Exercise is difficult when you suffer chronic health conditions. Sometimes simply getting out of bed seems like the 'main event' of the day. It's so terribly important for us not to become frail by at least doing simple stretches and movements throughout the day. Our bodies are very frugal and will not keep muscles and bone and tendons it does not need. From my perspective, chronic Migraine makes it especially difficult to exercise, and the joint pain of Lupus and spasms of Dystonia are an addi… Continue

Added by Ellen S on May 26, 2009 at 8:00pm — 1 Comment

My day

I had a very good day to day I got out side the house finaly. I some times take a nap after takeing my morning meds. They make me drousy, I fell like a zombe most of the time just seting dosen't work I hat not being abal to drive or even walk with the dog or just get up and walk to were I need to go. the bus is to far to walk. I found I can walk to the mailbox in pain but I now that I can. I get nurves when I go out I fell poeple are staring at me. The Dystonia makes me twitch most of the day in… Continue

Added by Browneyes27 on May 15, 2009 at 10:32am — No Comments

< Previous Post

All Blog Posts Tagged 'dystonia' (50)