So, How are You Doing Today ???

I just began this post as a way for everyone to share and reply to one of the most often missed questions of the day - " How are You doing today ? " Share your thoughts about how you are feeling today, how meds are affecting you today, twisting, symptoms, pain, etc. Basically How are you Today ???

beka

Open Forum... Talk about anything !!

Tags: appointments, coping, disorder, dystonia, events, experinces, feelings, living, medications, movement

▶ Reply to This

Replies to This Discussion

Permalink Reply by TWISTEDJAM on September 14, 2009 at 11:53am: I was diagnosed with Cervical Dystonia 3 years ago ...
my mom was recently diagnosed with Cancer ( Pancreatic ) ... she has 4 - 6 mths .
Won't be able to shake and twist this one off !
Dreading the many movements that are around the corner.; ▶ Reply to This

Permalink Reply by beka on September 24, 2009 at 2:20pm: Hi Grace- as someone who has went thru this with my own family member as well as seeing it professionally in the ICU on a ongoing basis- do not focus on the 4 to 6 months timeline...but focus on you being her daughter.. talk about things, events, feelings, cry when you have to ....

Do let us know how you are ..
Many prayers are being sent your way...

beka; ▶ Reply to This

Permalink Reply by TWISTEDJAM on October 7, 2009 at 10:32pm: Thanks so very much Beka for your heartfelt concern.

Many storms rage in this world but the worst storm of all is when one is loosing a parent,
a mother.
You are right about not focusing on the timeline that my mom has left but focusing on being a daughter!
My sisters and myself are spending as much time with her as possible.
It's so very heartbreaking to see the many changes that my mom's fragile body is going through.
No rain drops can compare to the many constant tears that my sisters and I have shed.
It still continues to rain ( hard ) but we're battling this storm as best as we can!

Prayers are always needed ... and so are friends ... thank you !
Grace; ▶ Reply to This

Permalink Reply by nursemate on October 8, 2009 at 1:58pm: I'm so sorry to hear what you're going through. I wish there was some way we could all reach out to you and give you a big hug. I'm sure your CD will flare it's ugly side but don't let it interfere with time with your mom. Much love and prayers your way.
Liz; ▶ Reply to This

Permalink Reply by Jeanie on September 14, 2009 at 1:37pm: Grace,sorry to hear about your mom.You're right about the dreaded movements,you're probably headed for some tough ones.Any extra,even anticipated stress can hurt ..hang in there. Take Care,Jeanie; ▶ Reply to This

Permalink Reply by Thorns on September 23, 2009 at 12:22am: Freida I've been having terrible pain in my feet also, for me it's at the front of my feet around the toes, and ball of my feet so the doctor is sending me to get orthotics for my shoes maybe this will help, I do have high arches and have been walking my dog twice a day since March. The pain is almost like a burning feeling and getting up at night sometimes is the worst or sitting for a while, hope these help.
Grace sorry to hear about your mom , I found when my father was deathly ill my dystonia seemed to ease off I don't know why but it got me through all the tough times, hopefully this will be the same for you.
Take good care of yourself at this time I know it won't be easy. Thorns; ▶ Reply to This

Permalink Reply by amelnycc on September 23, 2009 at 11:42pm: Hello,
Just like to share something with everyone regarding dystonic storms. Propofol pushes of 30ml. instantly stops the storms. Propofol are only allowed to be given in the hospital under supervision. My son had storms at least 16 hours a day. He suffers from dyt1 dystonia. only 12 years old and went through hell. None of the medications work and finally underwent dbs which was 100% successful. The only thing that immediately stopped his storms was propofol. The hospital also had him on propofol drip but that was only immediately after surgery till 3 days later when they turned on the dbs. I hope this helps. If you ever experience storms again, call 911 or have someone rush you to the emergency room and let them know that propofol is the only thing that stops the storms. If it worked with my son, it will work with everyone, cause his dystonia is mostly storms.... Hope I was helpful to some of you and may god make dystonia totally disappear from all our lives, amen.; ▶ Reply to This

Permalink Reply by TJD on October 7, 2009 at 11:57pm: Hello,
Getting lots of help from a neurological chiropractor. Feeling better all the time. But when stressed or upset tremors come back is this normal.? ,,I can tell I'm moving can slow it down even stop them say on my arm but then my jaw quivers. Sometimes when I try to will mysef from moving the movements get worse sometimes my arm looks like it is possessed. Is this all normal. Also is it normal to have your eyes affected. My eyes have a hard time adjusting to light now, never a problem before. It all is very new to me. I am just settling in for the journey.; ▶ Reply to This

Permalink Reply by nursemate on October 8, 2009 at 1:53pm: Hi all. Today is a pretty good day for me. I'm working and writing is not as painful today as it has been all week. Movement, twisting is also better today than the last 3 days. As it's flu season I'm working long hours and last week and this week have been very exhausting and frustrating. So today i'm HAPPY!!!!!!! Just less pain and spasms with writing makes my day so much more enjoyable. I say a prayer of thanks after each patient I put in a room and I've had no twisting/posturing and am able to write info for the dr clearly!!! Hope you all are having a positive day also.
Liz; ▶ Reply to This