luvslulu Female Phoenix, United States: Share

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Dystonia

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Karen B and luvslulu are now friendsOct 8

luvslulu and Northrncitylady are now friendsSep 21

luvslulu and scotsirishrn are now friendsSep 20

luvslulu and frekelz1 are now friendsSep 19

luvslulu and bkaren46 are now friendsSep 19

luvslulu and ricki-nicki are now friendsSep 19

luvslulu commented on the group Dystonia Sep 19

luvslulu replied to the discussion OFF the Cuff Post - Election 2008 Aug 26

Profile Information

Age: 62

City: Phoenix

State: Arizona

About me: "May God give you... For every storm a rainbow... for every tear a smile... for every care a promise... and a blessing in each trial. For every problem life sends...
a faithful friend to share...
for every sigh a sweet song...
and an answer for each prayer.”

Lets see. Where do I begin. I was raised in Milwaukee, Wisconsin and moved to Arizona in 1968. I was diagnosed with Cervical-Cranial-Dystonia in 1990. It affects my neck,shoulders, face(including jaw and tongue and speech).I also have some difficulty writing and doing any "repetitive" projects but I try and perservere, and do sewing when I can. I have a twin brother who has MS, but has been in remission for 20 years. He has come along way. I am divorced, but have a great relationship with a guy who understands my disability the best he can and is very understanding. (God Bless you,Joe!) I have one daughter and three FABULOUS grand children who all live in PA... with the exception of the oldest grandson who goes to college in Chadron NE. (who happens to be spending the summer with me here in Arizona and mannn..am I ever lovin' it! )

My handsome grandson,Tony!(I'm sure gonna miss him when he goes back to college!)

Here is a image of my border collie, Mercedes, who I had to put down a few years back. The power of a dog.. it has no ending! She will be with me forever!

Miss you,My Mer!
My fabulous daughter with me and her two youngest beauties, Mandy andJessy.

Any questions, feel free to ask! I love this new-found site, and hope to get alot of information flowing thru here! As the saying goes.. KNOWLEDGE is POWER, and both lead to a better understanding and a better quality of life for all of us!

Me and my Joe!

My motivations for joining WEGO Health: Help more people, Connect with other health activists (vigorous advocates health care specialists nonprofit leaders experienced community members), Increase my visibility online

My favorite message board/online group: http://groups.myspace.com/dystonia

Regarding the above board / group, I: contribute to the group

My primary personal website: http://www.myspace.com/pennyfrommilwaukee

My MySpace profile: http://www.myspace.com/pennyfrommilwaukee

Book I recommend the most: "Lucky Man" by Michael J. Fox

Second book I recommend: " A New Earth" by Eckhart Tolle

Best videos EVER!.
(BE SURE TO CLICK ON "UP ARROW" AT THE BOTTOM RIGHT-HAND SIDE AFTER VIEWING THIS FIRST ONE,TO VIEW MY COLLECTION. ALL THESE VIDEOS ARE DONE BY REMRAKABLE PEOPLE WITH DYSTONIA, AND ARE TRULY INSPIRATIONAL!

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At 12:51pm on July 30th, 2008, Robin Wood said…: Sey Luvslulu :)

I was wondering if You could go to the discussion "Succesful Treatment of Dystonic Tremor/Writer's Cramp?" and the other writers cramp discussion currently going and tell everyone the name of your famous pen. I don't why I always forget the name of it when it gives me so much relief. I hope you are doing well and enjoying your time with the gkids :)

Lots of love and hugs too
Lil' One

At 12:33pm on July 27th, 2008, Libertysnanners said…: Thank you. Times have changed since I was first diagnosed in 97. It was hard for me to reach out for support when in the beginning I was turned away and I went years not understanding why my body jerked involuntarily, contorted, had so much pain, and felt alone.Thank you for pointing me to this sight. I recently returned to work, I am controlling my pain and contortion and spasms with rolfing but here recently started going to chiropractor with same results, still have pain but it is nerve pain mainly I found if I can find the muscle that is spasming and causing the nerve to be pinched and relax that muscle the nerve pain lessons up.

I am slowly figuring out how maneuver on this sight. It took me while to figure out myspace and facebook.

At 12:04pm on July 15th, 2008, Ray said…: I must admit I have no idea what this friend page thing is or how it works. I see you are in AZ, we use to live in Phoenix in the early 80's, now we are in Visalia Cal.

I have been active on the NSTA board for the past couple of years.........and got to know Beka a few months past and helped her put together the radio PSA campaign with Alice Cooper.......

Ray

At 10:43pm on July 13th, 2008, karen said…: well after driving myself..my daughter and her boyfriend crazy all day the best i could do is get a border done using an image from my computer..i read your posts to robin about how you did it and printed them off so i could follow them..i think my problem was not having an image that was big enough..i think..i googled myself crossed eyed looking for one about the size that you recommended..oh well..it will do for now..i'm off to give my brain a break!!..hope all is well in your world my friend!!..take care and have a great monday!!

At 4:11pm on July 13th, 2008, Robin Wood said…: I love Your quote at the beginning. We Rock !!! Course it's gonna take me forever to get everything lined up. I'm gonna do my slogan "Leave No Dystonian Behind" in my top banner when I get around to it that is, ha ha I like the way You added "Make It Our Mission" to it, boy we make a good team, course we always have too :)

Luv You !!!

At 1:25pm on July 13th, 2008, Robin Wood said…: oh I forgot the pic

At 1:24pm on July 13th, 2008, Robin Wood said…: Ok I went in and resized it but I didn't like it that way. The larger version gives me more open water in which to place pics in, I kinda like them there, it's a cool effect there's a peace and serenity there with them surrounded by the water.

I also went in and found the code so it would tile like Yours and placed it in the box under the advance settings. did the same thing with the transpartency on the pics.

Here's the actual pic, omg it's huge like 2500 x 1500, there's so much more to the pic so maybe I'll place it somewhere there or write a blog about it.

I am having to build my page from the top down so I can place the pics and writing in the water, except for the poem up top, I like that in the mtns. It keeps changing on me tho when I go in and edit again.

K thanks for Your help. hope You are well today :)

At 12:43pm on July 13th, 2008, Robin Wood said…: Sey, what size is your background pic ? ... can't get mine to look right without it being tiled so I've got another plan.

At 6:58am on July 13th, 2008, Robin Wood said…: Nana P, Your so cool and so if Your page :) Open another window in internet explorer.

Great Job !!! I couldn't get mine to tile, probably to big, so was thinking of figureing out how to make the background fixed to where it doesn't move when You scroll.

Luv luv Luv to You Luvslulu (:

At 11:11pm on July 12th, 2008, Robin Wood said…: Ahhh Your page is awesome !!! Maybe if You go to Your URL from another window You will see the sunset like I do. http://community.wegohealth.com/profile/luvslulu

My background pic is a pic my friend took on our way down to San Diego when she was taking me to drop me off to get evaluated by the Neuro Surgeon for DBS, it has special meaning and is why I choose it. It's a large pic like 1024 x 700 or something like that, the pic has to be at least 955. I had to go and search for the top banner thing with the fish, bet You can't guess why I choose that one, ha ha !! On the theme page You can upload both images. I had to pick a theme that would fit my top portion pic, some are larger the others. I'm gonna change the background color on the bottom, the lighter color does my pics no justice. I like that the bottom is solid, less clutter on the eye, makes reading easier.

I hope that nerve calms down ... take it easy and rest up sounds like You have a super exciting week coming up that I so enjoy, I know how much You miss Your family. I go to pick up my Dad in Carpinteria on Wednesday, should be back on Thursday unless we end up casino hopping on the way back to Havasu, You just never know with me and my dad when we will return. I take him to Vegas on the 22nd to fly out to Tampa for good. I'm excited to get out of dodge and to spend some time with my dad.

Hugs n' smiles :)

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Re: Rolfing....anyone experience this???

Re: Rolfing....anyone experience this???

Re: Rolfing....anyone experience this???

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