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Dave Doroskewicz's Discussions
Time to throw a hail mary
Replied Mar. 23, 2009
Time to throw a hail mary
Replied Mar. 22, 2009
Time to throw a hail mary
6 Replies
Started this discussion. Last reply by Dave Doroskewicz Mar. 23, 2009.
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yes it is inharited my younger sister and i got it from my dad
Hi Dave,
There's one thing worse than having this disease youself and that is when one of your kids have it. I pray that my daughters don't get what I have. This scares me to death.
I wish I could say something that would make it better but I can'…
hey mama she is not in any pain she is constatanly monitered for any changes she has a trake and the breathing machine is at 40% to keep her o2 level in the 90,s she has a chest tube on both sides.she has a GJ TUBE IN HER BELLY FOR FEEDING ,CUZ SHE…
Dave,
I am so sorry, I hate this for you. What are they doing for her?
Are they doing anything to help? Pain management? Any sort of therapy, meds anything?
We are praying for you all.
Natalie -MAMA
Ah bless - sorry I cannot be of help Dave - just want to say my prayers are with you. With love, Patsy x
Sorry to hear about your little girl. I havent heard of this type of ataxia as mine didnt start until my thirties.
Does anyone else know anything?
Kati
MY LITTLE GIRL IS DIEING FROM SCA7 CAG REPEATS 230 IF ANYBODY HAS GONE THROUGH THIS AND TRIED SOMETHING THAT HELPED OR KEEP THEM COMFORTABLE LET ME KNOW
Profile Information
- Are you a patient, relative, friend, or medical professsional?
- Patient
- What type of ataxia do you have?
- SCA 7
- Have you been formally/medically tested for ataxia?
- Yes
- Is your ataxia progressive?
- Yes
- Is your ataxia hereditary?
- Yes
- If hereditary, do other members of your family have ataxia?
- Yes
- How has ataxia affected your quality of life and ability to work?
- turned my chest hair white
- What affects your ataxia (food, stress, etc)?
- food alchol talking to people about it at work
- What other ataxia support groups do you belong to and would recommend?
- ENAF NE Pa support group meets at mercy suburban hosp in nooristown
- How has your family responded to your ataxia?
- quitly
- What medication or treatments do you find helpful?
- wellbutrin effexor and sea salt w/water
- Please share your story with the community...
- 35 cant run and starting to buy as many assets as poss to leave to my girls.Twin girls 16 mo. old samie has sca 7 im in danville childrens hosp picu right now w/her.Lexi is at home w/mama.My wife michelle just recently was diag w/MS i give her a shot once a week.My younger sister jess has it my dad died last year from it an older cousin has it theres more but thats enough 4 now.i will add pics when i go home
- Do you have a doctor or hospital you would like to recommend?
- CHOP in philly dr. David Lynch
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Subject: [charity or school name] Needs Your Help!
As you know, I'm a supporter of [National Ataxia Foundation] and as you can imagine nonprofits and schools are facing a fundraising crisis this year.
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Subject: [charity or school name] Needs Your Help!
As you know, I'm a supporter of [National Ataxia Foundation] and as you can imagine nonprofits and schools are facing a fundraising crisis this year.
The good news is that more than 900 of the top Internet retailers and travel sites including Amazon, eBa… Continue
Posted on February 5, 2009 at 12:11pm — 1 Comment
Comment Wall (8 comments)
- At 3:02pm on January 4, 2010,
Bones said… - My name is Michael Jones and a member of the Orange County Ataxia Support Group in CA.. I have started up a new web site called American Ataxia Networking, Americans helping Americans with Ataxia. The web address is http://americanataxianetworking.ning.com/ Please come over and join and become a member!! It's like Living with Ataxia.org but most of the people are from England there so the this site is for Americans only. We will do different things they are doing like live Doctors doing live chat where anyone can ask questions. Plus Doctors joining and writing Blogs and add discussions. WE plan to have more medical professionals join also like PT/OT. Dave from Orange County CA.just made up a group for us you can make a group up for your chapter also and post events,discussions, chat, e-mail, blog. video, photos and share with all other members too. NAF.org has endorsed our site already and will post it under their links page, but won't be up until the 1st of the year. We just opened the site up in late Nov. of this year so as you can see we are new but will soon be the site to go if you live in America.We just hired a project specialist and have people already from ny to ca. and from tx. to Canada so the word is spreading out fast. We are averaging a person a day joining. Hope to see you there. The word is getting out please be a part of it!!! Michael Jones
- At 8:49pm on February 5, 2009,
Natalie said…
- Hey Dave,
How is Sammy, haven't seen you on the chat in a while... I hope and pray you all are doing ok and Sammy is better.
HUGS.
MAMA
- At 1:18pm on January 24, 2009,
Natalie said…
- Yes that's me. Hope your daughter is doing we better.
- At 10:09am on January 24, 2009,
Terri Mokrejs said…
- Dave, Yes, I really like Dr Lynch. He is the only neuro that calls me back right away and seems to care about making my quality of life as good as it can be.
Right now, I am off all meds and have been on a gluten free diet for just over a weeks.. I have had a great couple of days, no major episodes...time will tell if this gluten diet works or if I am just in a good cycle. The only vitamins that I am taking are B12. I am also doing a kinesiology every two weeks. I have been to the support group in Norristown once, but with my boys schedules it is hard. I am planning on coming in March.
- At 12:50am on January 24, 2009,
Della said… - Hi Dave, I think I chatted with u on ENAF chat, I'm blondie, how's little Sammy??? You're a prison guard, right???
- At 7:43am on January 23, 2009,
TERI KEMPER said… - hi dave, dr. wilmot is the doctor associated with my support group here in atlanta. i was seeing a different neurologist, but since he was the pro i switched. more than physical, he helps just by knowing what's going on. he is always ready to prescribe something for symptoms, but he knows i don't like meds, so he doesn't push. and he's open to alternative treatments (diet, exercise, sleep, etc...)
- At 7:10am on January 22, 2009,
Marjorie said… - Hi Dave!! Thanks for inviting me!
- At 2:10am on January 4, 2009,
Dave Doroskewicz said…
- god doesnt throw u a curveball if he doesnt think u can hit it
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