Canary3's Page
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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...
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- In the online health communities I participate in, I'm:
- not really sure where I fit yet
Comment Wall (22 comments)
- At 12:22am on November 14, 2009,
Canary3 said…
- Hi Rebekah!! I know youv'e been busy too with Dysto Mag.,think it's absolutely wonderful. Loved your picture, truly wish you where back down in Inkster,I'd come get ya and the dog and take you out! Dysto girl night out,that would be fun. Never seen anybody like me yet except for Young onset adult Parkinson Group the closest thing. Thats way over in StClr.Shores,9mile and I94 and now way to far for me safely to drive alone. They felt like family,only they could understand,but I had no caregiver. It's been a year since I've attended I guess will never be able to return. Thankgoodness I was able to get a computer finally,no thanks to my husband,and find care 4 dystonia. Google absolutely fantastic,wish I could Google to find my keys,haha. Wierd weather,warm for Nov.which is good because it has taken this long to finish everything I poss. could in the garden. So much more difficult this year,bagged just a little pile of leaves,only way to do it was to sit down on lawn with tiny rake and cane and them jam them in with my gloved hand. I am learning to do everything different daily depending on degree of dystonia. I must look silly to the neighbors crawling all over doing yard work,rolling over,ectbut ya gotta do what ya gotta do. Have had a UTI since Halloween,Botox Tx right before then which lowers my immune system,and then came down with a virus for a week,not fun. Husband also became sick,then UTI,my friend, came back . I guess rolling in leaves and dirt isn't good for suprapubic catheters. Darrell's internship is over with the end of Dec. There is a hiring freeze both @ Fox and Paramount but Paramount doing everything they can to hire him in. May have to work briefly as a temp as need be. Darrell's job there now is to promote the film Grease,country wide. Waiting for homecare nurse to change catheter,I could do it myself,been many years and dystonia in hands,but with this infec. needs to be done. Agency argueing with HMO about date and coverage of course. Oh well soon, @ the end of the month I think my husband is retiring and changes will be coming. UAW voted for cheaper healthcareplan which is still being created @ this time. Should be done in early 2010. If I think its been tough all these years with an HMO just wait. @ least I finally own now my manual w/c. P.T. just ordered extended hand brakes and a w/c pad. May not get it in time,takes a long time to be authorized if qualified. Husband has been home since June driving me crazy. Can never keep house clean which frustrates me. He then hurt his back and has done nothing. Its like a nursinghome around here. I feel like a slave who can never leave,always cleaning,but to ill to go out and take a walk. Wish I had time and space for myself to think and create once again. Instead I have to take care of my husband and a house,makes no sense. No wonder I never sleep. Daughter getting married on Dec12. Trying to put up some x-mas decor for all the relatives flying in. Hopeflly I will be able to put up med/small artifical tree without breaking ornaments. Will take me a couple of weeks but if I think of it as therapy,it won't be bad. I have a bird collection that I add on to it yearly. I have live Canaries and one year I couldn't find one of them in his cage. I looked everywhere. All of a sudden I heard a tweet and there he was.blending in with fake bird ornaments on the x-mas tree. Had to tell you that story. I had looked everywhere for over an hour thinking the worst. Dr. has put me on Cipro,strong antibiotic,increases dystonia ,but no dystonic storms thank goodness,biggest fear! Nurse coming Mon. to change tube,have to be well for wedding.a lot more work and organizing that needs to be done around here. Sure hope your upswing continues,ride those waves! But rest,and get strong. Remember without experiencing the pain and lonliness of the downswing,the upswing wouldn't feel so darn good! Sure hope our payoff is good up there in the spirit world,for all the suffering and pain we will continue to endure. Sure glad to know I am not alone,but feels like it here in Dearborn. Stay well, my friend. Kathy
- 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
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