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Robin Wood
- 48, Female
- Lake Havasu City, AZ
- United States
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- Blog Posts (4)
- Discussions (6)
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- Groups (3)
- Videos (11)
Robin Wood's Groups
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Healthy Living
69 members
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Migraine
156 members
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Dystonia Neuro Movemen...
268 members
Robin Wood's Discussions
Dystonia Storms
Replied Feb 5
Robin Wood's Page
Latest Activity
robin, looking at the photo of your toes, they remind me of how my symptoms started.
i am affected on my left side; now my toes curl under, making it difficult to walk, but unfortunately they started by how yours look in the photo. i have seen 7 ...
I think I by mistake deleted a portion of this discussion.. call it typing with two fingers.
But how are you doing with the Vit B12 shots ? Sympto,s subsiding- Robin ?
oops...
beka
robin..i have to agree with ellen..it is SO good to say that you have been missed!!..as have your unique view of life and way of encourging people with your words and knowledge..
i'm so glad that you have found a way to manage your progressions.....
Well here it is nearly a year and a half since I wrote this post .... hard to believe so much time has passed. A couple of months back I finally got in with a PC, something I had gone without for nearly 9 years now. I frist had some pretty routine...
Profile Information
Dystonia Awareness Ribbon
Robin Wood's Videos
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Dystonia ~ What's that like ?
Added by Robin Wood
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Kids with Dystonia
Added by Robin Wood
Robin Wood's Blog
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
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
Posted on October 19, 2009 at 6:16pm — 4 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
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
Posted on September 4, 2009 at 10:42am — 1 Comment
Helping Me Help Myself
Due to my on going progression of my Dystonia it has become more then evident that if I am to retain my independance of living alone and caring for myself without the aide of a care taker in some of the most basic needs that changes were going to have to made to my home.
About 4 years ago when my shoulders and arms became involved, infact the frist day I ever spasmed in those areas was in the middle of the summer, I was so hot and couldn't cool down, I was sweating profusely from the spasming m… Continue
About 4 years ago when my shoulders and arms became involved, infact the frist day I ever spasmed in those areas was in the middle of the summer, I was so hot and couldn't cool down, I was sweating profusely from the spasming m… Continue
Posted on June 30, 2008 at 12:45pm — 6 Comments
Lets Talk Muscles ~ Looking Beyond The Brain
The earth is composed of over 100 elements, the most abundant of which is oxygen. Oxygen is essential to the survival of all living matter. Take away our supply of oxygen for just 4 minutes and death is almost assured.
A spasming muscle prevents blood flow; when the muscle is not receiving enough blood, the muscle is also not receiving enough oxygen. In an athlete, a lack of oxygen to an over worked muscle will severely hamper performance by causing an increase in lactic acid in the muscles and… Continue
A spasming muscle prevents blood flow; when the muscle is not receiving enough blood, the muscle is also not receiving enough oxygen. In an athlete, a lack of oxygen to an over worked muscle will severely hamper performance by causing an increase in lactic acid in the muscles and… Continue
Posted on June 30, 2008 at 10:01am — 2 Comments
Comment Wall (33 comments)
- At 3:56pm on July 12, 2009,
Ellen S said… - We miss you Robin - hurry back!
- At 5:40pm on April 24, 2009,
Cindyrella said… - Had some time and thought I woudl catch up on teh board. I hope you are well. I miss talking and reading with you.
- At 10:03pm on February 5, 2009,
karen said…
- hi robin..
sorry it has taken me so long answer your message..i have been so busy trying to get caught up on emails and other stuff since i got my computer back i never thought to check the messages on my wego page!!
catching up is going slow..full body spasms have increased over the last couple months..upped my baclofen output from my pump hoping that will help some..
hope your doing good and that your winter weather is a lot better than ours!!...back to catching up in here sure i'll see you amoung the threads
take care karen ;0)
- At 11:52pm on January 18, 2009,
karen said…
- hi robin..just wanted to let you know that i'm still out here just have been without a computer for the last month..finally got the chance to use my daughter's that she uses at work..i feel so out of touch with everyone..not sure when i'll get mine back but as soon as i do i'll be back..till then take care!!
- At 5:31pm on January 5, 2009,
CDavidEricson said… - Hi Robin. Happy New Year.
ITB Surgery tomorrow. At long last. Can't wait to see how much it helps.
My best to you and yours in 2009.
Take Care,
Dave
- At 11:46am on December 28, 2008,
robert said… - Hi Robin,
Lost in the main festivities, we are the forgotten ones lol. Have a wonderful birthday and I would also wish you Happiness, Joy and many Blessings for the New Year.
Robert
- At 11:59am on November 2, 2008,
CDavidEricson said…
- Hi Karen
To you also I thank for the welcome. It is good to be here, I can tell already. I recommend to you that you come to Vegas for the entertainment, not the Medical Care. It is the worst I have encountered, and I have lived in 14 states. Most recently I lived for ten years in Seattle, where I was first diagnosed with Dystonia. The Medical there can not be touched, as far as I am concerned. The problem, for me, was the weather. Every storm front that came through, every other day, caused me more pain than I could handle. In Vegas, the weather is relatively calm. I LOVE heat, and HATE cold, or should I say, my body does. Hey I grew up in New England. Used to be able to stand 40 below with the windchill. Not anymore. If I shiver at all, I want to SCREAM. And sometimes I do! Anyway, my insurance almost sent me to Phoenix (Mayo Clinic) or LA until they found a cheaper option. Took ten months, but finally got a Pain Specialist to do Intrathecal Baclofen trials. He immediately wrote my PCP, and a couple of days ago I got the MRI and X-Rays of my back so I can see the Orthopedic Surgeon who will install the pump. It was a long time coming. Would have taken a few months at most in Seattle. One thing about this town, as the economy goes down the tubes in this country it is at least three-fold here. Unemployment highest since the 80's. Over 7.2 % last month. As people lose their jobs, they also lose their insurance. So my appointments are easier and quicker than they were when I started seeking treatment here two years ago. But MDS Neurologists in this town are few. Most of them won't take my insurance. Finally got a decent one at University Medical Center Neurology, although even he has never seen a case like mine, and won't treat me until some spasticity is removed. He can't tell how many of my symptoms are from the pain in my lumbar part of my back. If, after I receive the pump he feels it would help more, he will consider DBS, which I am not too keen on.
Thanks again,
My Best to You and Yours,
Dave
Las Vegas, NV
- At 2:10pm on October 21, 2008,
karen said…
- well you can tell i'm not sure what i'm doing when it comes to adding pictures!! you got double of my beautiful woods out back..lucky you..enjoy!!
- At 2:09pm on October 21, 2008,
karen said…
hi robin..i love your myspace page..you do such beautiful work my friend!!.i would be honored to have my poem included in your poems in motion section thank you!!..thought i would share a little of the art work that mother nature has given me to enjoy..the first one is the tree in our side lot..
the second is what i get to look at while i'm sitting in my chair..mother nature sure has blessed me!!
take care my friend!!
- At 10:05pm on October 15, 2008,
karen said…
- hi robin..thank you for liking my new "tilting and leaning forward" picture..i had to have a picture of myself to go along with a comment i posted on the DMRF
board..it will be part of an article in the november issue of their magazine..it
has been awhile since i have had a picture taken of just myself..usually i'm either sitting by someone or in the background so i never really noticed how the "real" me looks..needless to say it was kind of a shock and i wasn't sure i wanted to use that picture..but then figured this me so put the pride thing aside
and went with it..so it's now.."hello world..i tilt and lean forward"..don't ya love me!!
hope everything is going good in your world and your enjoying cooler temps!!
we are in the middle of our "burst of color" time of year and i just love sitting here looking out my back window and seeing this beautiful picture that mother nature has painted..makes it hard to have a bad day!!
take care my friend!! karen ;0)
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