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Hi beka,thanks so much for the signed copy of I'm Moving Two. It's amazing how you can just feel the emotion as you read on. So real,painful,frustrating ,yet hopeful. Are you finished with no.3? I can't wait! beka, you have a gift with words.
How are you Ellen? Have been Dx with DRD,Lft arm unable to use much without setting off dystonic reactions,but find @ times it will also jerk uncontrol. by itself. Don't know what I would do if both my legs did this too! Must be a connection up in...
No problems receiving care4dystonia website here in Detroit metro-area. Like new format,easier to use. beka when does your new book out? When do you find time? You are amazing.
Dear Robin. Living in the now,so very important. I have limited ROM of Lft. should,arm and have been living in fear of Rt being effected soon. But after viewing your blog,you have inspired me to keep pushing harder, and harder. Daily, you try to k...
Genetically some of us are already @ a disadvantage, but then add now a possible concern with vaccines as Dystonia as a side effect,I'm now frightened for my adult children. How do I properly advise them? I have seen pts. with Guillain Barre Syndr...
beka,this has been the the most interesting,enjoyable way to inform others around me,a fellow Dystonian,about this disorder. What a delight!
Dear Elaine Don't give up! Some of us have fought for 20-30yrs for approp.Dx. I think almost all of us have been labeled ,pyschogenic,especially when Medical Personal have little current ,knowledge in Movement Disorders. I know soon,someone will s...
Profile Information
- In the online health communities I participate in, I'm:
- not really sure where I fit yet
Comment Wall (21 comments)
- At 1:43pm on November 11, 2009,
Rebekah said…
- Hi Kathy!
I didn't realize it was so long since I had checked my page! :)
I am on an upswing with my dystonia, so have been taking my dog out. It's great. It has been warm a couple days here, so that is a nice surprise so late in the year.
Wow, that must have been fun for your son. I love the simpsons. LOL :)
How are you doing? Any word on how your coverage will change??
- At 5:08pm on October 7, 2009,
Rebekah said…
- I think we got those winds last night. It was very strong over this way. It's lovely and sunny today. I am back out in the cold, DX wise, as the osteopath I was seeing for free just withdrew the dx they were treating me for.
I'm doing the best I can. Never got the new chair, but have been doing a lot less and feeling a little better physically these past 2 weeks. But am off the meds I was taking so... :)
I'm so glad you're feeling better. Little by little, right?
God bless you, Kathy.
- At 6:04pm on October 6, 2009,
beka said… - Hi - Just wondering how you are doing ?? Diabetes Insipidus - go to www.diabetesinsipidus.org for information.. Just know that many are thinking of you.
beka
- At 2:51pm on October 5, 2009,
Rebekah said…
- Yes, Dearborn! I used to drive through there daily on my way to work at an academy in Inkster. I love that Michigan! :) How are you? I pulled out some of my paintings last night, looking for some heavy sketch paper. Was nice to see them again. If I can, I'll post something for you to see. I'd love to see yours!
I hope you are doing better, Kathy!! I think of you often.
- At 12:38am on September 26, 2009,
Rebekah said…
- Yes, you know the mind tends to the essentials first. So, when you're dealing with challenges sometimes creativity takes a back seat. You'll get it back soon, so don't you dare get rid of your paint! :)
Yes, hobbies. I am an artist. I almost wrote that I 'was' an artist, but the truth is I am still one, whether I produce or not. You're very right about about things being different. Staying ahead of changes and updating a practical plan are two things I reinforce to myself on a regular basis.
I used to live in Oak Park. Which suburb are you in? Michigan is soooo lovely. I'm glad your babies are singing again. I hope the trees take their sweet time fading this year. Let's hope for loads of color!
Hugs, Kathy... Tomorrow we get better :)
- At 9:13am on September 25, 2009,
Ellen S said…
- Kathy, Hang in there sweetie. You mentioned DRD - I must have forgotten - are you dopamine responsive? I'm hoping the potassium helps you. Were the other electrolytes balanced properly as well?
- At 6:17pm on September 24, 2009,
Rebekah said…
- Your bladdar is on release, so I'll assume you're not retaining fluids. I hate that this thing can do things to the heart. If you have swollen red blood cells (or too many) it can drive up your bp and hr.
I noticed you rote me a little over a week ago. How are things now?????
- At 6:08pm on September 24, 2009,
Rebekah said…
- Oh Kathy, I'm sorry you're having such a tough struggle. I thought the surgery was to pose a solution to the bladdar. Why does this happen? Do you think you're having a reaction to surgucal meds or just the trauma?
Be well, honey! You can fight and survive this!! I'm praying for you. I'm thinking of you. I recognize the pain and sorrow involved in dealing with this and I'm sending you good vibes.
Is your staff rising to the challenge?
- At 5:19pm on September 23, 2009,
beka said…
- I want you to CALL your internist and/or primary care physician...NOW..
They are on -call...So pick up the phone.. If you do not feel safe- go to your local ER...Where is your family in all this ??
beka
- At 1:55am on September 14, 2009,
Rebekah said…
- How are you doing?
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