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beka
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Thanks Beka...
Dear Dystonia, I have let you control me for way to long, And now it is time to take my life back. I am going to live and enjoy each and every day. I will cherish every moment. And I am going to fight with everything I have.
Dear Dystonia -
Thanks for opening my eyes. I live with you, NOT For you.
beka
Hi Mo -
Any decisions made now that you have a diagnosis ?
beka
Is this not what we should be looking for ???
beka
Welcome back , in every sense of the words and meanings behind those two words. There is no need to apologize or feel guilty about anything. It is just good to have you sharing your experiences again with the group.
Just think , You become aware ...
Profile Information
- In the online health communities I participate in, I'm:
- a Librarian (Passionate researcher)
- The online health resource I contribute to most frequently is:
- http://community.wegohealth.com/group/dystonia
- This site is:
- a community I manage/moderate, a community I contribute to
- Another place where I contribute is:
- http://www.medscape.com/nurses
- Which is:
- my profile on another website, my blog
- I’m also on:
- http://twitter.com/care4dystonia
- It's:
- my twitter
- You can also find me at:
- http://www.care4dystonia.org
- This is:
- a community I manage/moderate, my profile on another website, my blog, my personal website, my non-profit
- More about me (my health interests and reasons for joining WEGO Health)
- Well, I'm not sure what I should say about myself. Too many of you know me, even though I'm one of those who likes to be behind the spotlight. This Forum has been a dream of mine for some time- providing correct education and information about dystonia. Too many other BBs are too social and chatty for me. I love silence. Not that we dont need social networks - we do- but I'm more of a loner doing things on my own- always moving forward...strongly believing that if all the dystonia nonprofits put aside their differences, arguements, conflicts etc. TOGETHER we could accomplish much. We really don't need a celebrity to sell dystonia. Each of YOU who have joined this Forum is a CELEBRITY ! You MATTER as does dystonia..but Life also has much to give...You just have to find it, no longer what it was before dystonia, but what it will be...That's key !
Beka's Blog
Rcommended Reading :For Anyone with a Chronic Disorder- Pain, Depression, Dystonia, etc.
Recently I have sent out an immense number of coupons for the book I'm Moving Two. The second book is called I'm Moving On... Are U ? , which takes you on a journey from Arce's office, potential denervation, choices, Myobloc treatments and immunity, climbing the mountainous regions of the turkish Rivera, the uncanny caves of Malta, paved bike German streets in Muenster, ICU work with a movement disorder, and eventual treatment failure with medications; closing out with thoughts about DBS. I do n… Continue
Posted on May 13, 2009 at 2:23am —
Freedom from Chronic Disease ? Try Butterfies !
May these Words be inspirational to All ;
Butterfly Girl” by Jaylene Johnson:
“Do you only remember the way you used to be
Full of fear and doubt and insecurity
Taking things that people said to build a web around you
Thinking you’d be safe in that place
I know you’re frightened and your wings are frail
But summer’s here and you’ve outgrown your silky veil
The walls of your cocoon have left no room for breathing
So break free
Break free
Butterfly Girl
Don’t you know you’re beautiful by… Continue
Butterfly Girl” by Jaylene Johnson:
“Do you only remember the way you used to be
Full of fear and doubt and insecurity
Taking things that people said to build a web around you
Thinking you’d be safe in that place
I know you’re frightened and your wings are frail
But summer’s here and you’ve outgrown your silky veil
The walls of your cocoon have left no room for breathing
So break free
Break free
Butterfly Girl
Don’t you know you’re beautiful by… Continue
Posted on May 6, 2009 at 6:47pm —
How to be an RN with a Movement Disorder ? PART 1
I get this question asked almost constantly when I am a work in the ICU. First, a bit of basic information about me. I truly never wanted to be a nurse,but due to the convincing powers of my father; I landed in Nursing school right out of high school. Art school was something that I had strived for while dodging high school biology and physics courses. But, my father would not have "one of his 3 girls demoted to the status of a starving artist". That status would belong to my youngest sister aft… Continue
Posted on May 6, 2009 at 12:30am — 1 Comment
Dystonia Awareness, theorists, no bias...
Wow, am I surprised at the amount of emails I have gotten from reporters, nursing magazines, and others who all deal with publicity...They all heard about my being a recipient of the New York Times Award for Nurses. One of the winners I just realized was one of the nursing theorists I read about during my graduate level work. Her husband is a judge. She sat right next to me. I should have asked her more about her theory of "human becoming ". Parse is her name. I never understood nursing theory w… Continue
Posted on December 17, 2008 at 8:09pm — 1 Comment
The Tribute to Nurses Awards features Dystonia- NYTimes Magazine
Dec 2nd 2008
Well, after coming home from the Gala yesterday I ended up sleeping most of the day...the TV was on at 1141 PM..not sure how it came to be on...but the Gala began at 830 am..it was a breakfast Gala...within the NY Times building... really massive..and modern looking.. planted Birch trees in the center of the atrium.. but they all looked like they will not survive the winter or the cold...they were craned into the building..showed up early as one never knows about the traffic and its… Continue
Well, after coming home from the Gala yesterday I ended up sleeping most of the day...the TV was on at 1141 PM..not sure how it came to be on...but the Gala began at 830 am..it was a breakfast Gala...within the NY Times building... really massive..and modern looking.. planted Birch trees in the center of the atrium.. but they all looked like they will not survive the winter or the cold...they were craned into the building..showed up early as one never knows about the traffic and its… Continue
Posted on December 3, 2008 at 10:28am — 2 Comments
Comment Wall (60 comments)
- At 8:23pm on November 30, 2009,
TWISTEDJAM said…
- ...... me again Beka ... my mom is now @ my sister's residence as we wanted her out of Palliative Care, of course with the Doctor's permission and his findings on her condition. She was staying @ the Princess Margaret Hospital here in Toronto.
We threw her a "celebration of her life" gathering of her friends and relatives in my sister's house ... needless to say ... not a dry eye in the place !
She's resting comfortably as I write this to you and by the way she thanks you and my other Dystonia buddies on here for the concern ! We're hoping she'll make it for another Christmas ! We all wore the clolour purple ( Pancreatic Cancer )... I'm so very proud of my mom ... she's holding her ground ... being brave ! ! !
- At 8:05pm on November 30, 2009,
TWISTEDJAM said…
- Hi there Beka !
YES ... the pain has intensified !
Seems to me when I walk it gets much worse ... mostly in upper spine region as I have CD. This is all new to me as I've never felt this high volume of pain before !
A definite "must" call my Neuro and mention what you've said about possible anti-bodies etc. I never knew there are "37" muscles in the neck area alone ( my Neuro never told me this ) then again I've never thought to ask !
I do have to start asking much more questions ! Stunning gorgeous horse by the way... I wonder how many muscles they have in their neck.
- At 2:35am on October 7, 2009,
Canary3 said… - Hi beka,Thank everyone for their concern,been laying low,working on strenghth and remaining stable. Had eval.last Mon. with mov.dis.spec.,having labs drawn weekly for lytes,BUN and Creat. Was removed off of Wellbutrin Sr 100mg,which I had been on for years. Since insert. of Suprapubic,have been Neuro.unstable,with increased output,hypokalemia,Hypertension,increased Dystonic symptoms ect. Urologist stated poss.autonomic hyperreflexia due to stim. of tube in bladder. Put on Ativan prn for increased Dystonic symptoms. I am to call Neuro.on Thur. for lab results and take it from there. CAT SCAN of brain norm,MRI done earlier in year,norm. He will decide whether to test further for ADH levels,with water depriv.test. Diag.with DRD,and Gen.Dystonia,today noticing large toes bilat. are sticking straight up. Also thumb right hand twice today,turned cyanotic,ugly,duskygrey blue. Dystonia increasing along with bladder spasms and output tonight. Took ativan,extra salt,and a glass of OJ. Still I have improved with the potassium supp.have much more energy. Ins. pays for nurse to come to home x1/wk,and PT breifly. Hope to have answers soon,really getting behind in work around here. Winter around the corner,daughter getting married om Dec 12. Sure hope to be more like myself soon. Hair was filling back in nicely,but noticed,falling back out again. How are you feeling now that the cold weather is here? I'm really concerned with all the viruses coming this season. Neur. get very sick, and lungs don't do well either. I pray that all Dystonians throughout the world,remain physically and mentally strong! Take care of yourself beka,Say hi to Dr.Oz! Kathleen
- At 1:13am on October 7, 2009,
Rebekah said… - It just doesn't seem like he should be able to do this based on absolutely nothing, even though I've already seen a neuropsychiatrist and a talk therapist who said it wasn't psychogenic. The d.o. said he didn't care about what they said and told me "I think sometimes you just don't -wanna hear- things" which is almost verbatim what my mother has been screeching at me since she had her closed head injury and decided she hated me.
- At 12:59am on October 7, 2009,
Rebekah said…
- This is a DO who ditto'd the Neurologist who did a history on me while I was having a storm and dx'd me as having early-onset generalized torsion dystonia with respitory involvment. Prescribed baclofen and renewed the tramadol. The DO then added the idiopathic and told me they weren't going to bother with tests (because I don't have insurance, haven't been able to work for a while).
My mother freaked out when I had another storm (they stayed far away from me when I was getting sick and completely ignored me when I told them what was happening) and rushed over to the doc weeping. Came out with a bag of cymbalta for me, which I once took for depression, so I took it very seriously and iddn't want to take a med without having at least talked to the doc to find out why.
When I went back in he was 'smirky', the only way I know how to describe it.
I took the cymbalta until it ran out and decided to go off of it because it cut my awake time back to about 3 hours in the afternoon and then I couldn't think clearly. Totally unacceptible for me.
Went back in to talk about other options and he was upset with me, fidgeting and then prescribed Risperdal and gave a long spiel about how he was trying the cymbalta because it was much easier on the system. I told him I appreciated that, but that I was responsible for making good decisions and that I needed to do some research on the Risperdal because I thought I'd heard some things about it that concerned me.
I did the research and was a bit disappointed when I found out it is known to CAUSE 3 other movement disorders. So needless to say, I dind't take it. I also didn't call him back, since I didn't want to embarrass him.
I have a pretty odd relationship with my mother and a few weeks later (after an exhausting SSD exam) she went into a long tirade about how the psychiatrist may have said it wasn't psychogenic but she didn't know them and so she still thinks it is.(primarily because she only does research to prove her preconceived ideas, won't even go to the dmrf website, which is insane) She _implied_ that that is what the DO (who is her friend and was seeing me for free, with whom she has been discussing me and all her negative feelings about me. In her world absolutely everything is my fault.)
My Dystonia is mostly tightness, and I have movements after some exertion, which I avoid mostly because of the pain and difficulty. I cant do a lot. So when we go out is when my movements are more visible to them. I can't sit up for an hour or so or climb the stairs and get dressed and get cleaned up and not have movements. It just doesn't happen. But all she sees is me having more symptoms when we go to church.
Anyway, So I extricated myself from it and called the doc to ask if he thought it was psychogenic and to request he not discuss my records with my mother when I'm not there. It took a little more than three weeks, with me calling them 4 times to follow up, but yesterday he finally called back and said that they were calling it 'functional' and that he had already told me it was functional becasue the MRIs and the nerve tests didn't show anything. I told him that those tests are only given to rule out other things and that he had never said that to me.
He then basically yelled at me as if I was a manipulative child. It really hurt me. I trusted this man up until the moment he began to yell at me. I cannot believe that I am having to go all the way back to the beginning.
I have already done my time with a psychiatrist and a talk therapist. The relationship between him and my mother is what precipitated this. I have given him no reason to treat me this way and he doesn't have an even basic working knowledge of Dystonia. He fell silent when he asked me what I thought dystonia was and I told him it was a malfunctioning of the basal ganglia.
I really am sick of this. I am off the medication now and feeling the loss of it, but what in the world else am I supposed to do? I can't drive, my car is broken down anyway and we live in a suburb with no public transport. I can't just connect to services.
- At 5:49pm on October 5, 2009,
Rebekah said…
- I know you have a lot going on right now, but I have a question. Is it legal for a doctor to give you a diagnosis and then change it without seeing you again?
- At 1:48am on October 3, 2009,
Lene said…
- I just lost all I typed to you! I started reading the Tribute to Nurse Award and click on continue...duh!
OK for myself, I do not know enough of all the variety of dystonia to feel confident to type a message back to the person. I know many must read all the interesting things that are said. I read every post but it takes me time.
I do not have a lap top so I only get on the computer usually 1-2's a day and that is just for reading mine. I really get a pain if I am on too long.
I was myself frustrated a time or two because I do not know how to find the subjects we have previously typed. Am I missing something? Is there or could there be a "keyword" or "phase area" to help pull up the section that one may be seeking? I always thought maybe it was because the subject had already been talked about or closed. I am not sure how the site works in looking for a particular subject. Just my idea... Do you suppose peeps get tired of typing the same stuff over and over for new people with old subjects? I am always willing to type if I can offer something otherwise its useless..
I remember I was that person trying to find out why my head was moving slowly to the right...I was reading but was not taking it in..My denial factor has just recently come loose....Luv Lene
OH BTW I am still on cymbalta 20mg...lol I can't seem to get off of it without all the shark electric shocks going down my arm and in my fingers...Got any ideas?
My doctor said she has never encountered a problem like this. She had me stagger it and take only 6 pills in a week ..etc no dice...
- At 8:01pm on October 2, 2009,
Mo said… - beka...
dbs is an option if i have dystonia. if i have et, then both are options. i can't seem to get a firm diagnosis. 26 years ago i had et diag, then et, then spasmodic torticollis, then et, then mycoluns dystonia, then idopathic dystonia. it has been a 50/50. i would rather not deal with incisions and drill sites. i didnt do this longer ago cause i had the original appt then broke my wrist 4 days prior to the appt.
- At 11:30pm on September 28, 2009,
Racersprincess94 said… - Dear Beka,
Its actually a photo of me and my husband in a "fake" telephone booth at Epcot in Disney World. :-) I have only been on the Sinemet for a few weeks. I believe its starting to help though thank heavens. (I have good days and bad days... is that normal?) I was only diagnosed a few months ago so this is all still very new to me. I had been hospitalized 3 times in two months for over a week each time. Im very much ready to finally get back to my normal life and move on. Just wanted to see if there were others going through the same situation I was and see if it was even possible to exercise again. (I use to love work out!) Thanks for the comment and the encouragement! :-)
- At 5:02pm on September 28, 2009,
karenperalta49 said… - I went to the site you mentioned and could not find the Top 55 Questions document or the specific DBS page. Could you give me the exact URL for that page? It would be deeply appreciated. Thank you.
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