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June 2nd, 2007

02:15 am
Hey Guys,

I'm Ali, and from Newfoundland, Canada. I only have a second to post right now, so a more formal introduction will follow. My boyfriend has Duchenne. I am trying to get more into the fundraisin bit... does anybody here have information on the MDA lockup or MDA jail? I'm trying to get that started in my town sometime this summer, if anybody has any ideas for me.

Will post later....

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May 30th, 2007

05:05 pm - Hello there

It's like this, I've been diagnosed with oculopharyngeal MD and I would like to read more about the disease. So my question is, could anyone here recommend a reliable source with lots of info? It could be either a book or a website, either way I'd be equally grateful!

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May 16th, 2007

07:48 am - New Community

I created a community to post news on SMA and to discuss issues related to SMA. It is not to replace this or any other community... Mostly it is because I needed a place to post the news that was more fitting than my geektastic day-to-day journal.

It is called living_with_sma. The rules are simple:

1) The keyword is *living.* You will get slapped upside the head if you seriously believe the doctors are right and you will die by a certain age.

2) This does not mean you can't post questions or problems related to SMA. Please do. You may find sharing problems helps others who are facing similar issues.

3) You aren't dead yet.

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March 30th, 2007

03:33 pm
Hi again!

Yup, I'm working on another article for MDA. Do any of you volunteer for something other than an organization related to your disease? Do you maybe work a crisis phone line, or lead a Girl Scout troop, or read books to blind iguanas? I would like to talk to you. If you don't want to comment here, you can reach me at abby@albrechts.com ...

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January 18th, 2007

04:46 am
Hello, my name is Savannah and I'm 19. I'd like to first say that It's amazing to see you guys dealing so well. I only wish I had the same strength. I commend you all..

Where to begin..? Well, my aunt and uncle on my mom's side both passed about the time I was born due to Friedreich's Ataxia. Although I didn't have the opportunity to meet them, I still feel the pain, you know?

As for myself, I've become highly concerned. I made a note one day that I happen to have a select few symptoms of FA. This includes: scoliosis, heart palpitations, shortness of breath and nystagmus, but no signs of muscle degeneration. I guess my question is: can you develop OTHER symptoms before muscle degeneration or ataxia?

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October 21st, 2006

09:58 pm - Local MDA fundraiser
My apologies if this isn't the spot for this or isn't permitted; I didn't see anything in the comm profile to the contrary...

I've been arrested as part of my local MDA Lock-Up here in Ithaca, NY.  I'm looking for ideas and help as far as fundraising.  Unfortunately, the event is already coming up in under 2 weeks.  If anyone out there feels like lending a monetary hand, visit my page.  Hit me with some replies for ideas that have worked for those out there that have done this before.

Thanks in advance!

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September 14th, 2006

10:05 pm - Scholarships for the disabled
I thought it might be a good idea to compile a database of scholarships for the disabled, focusing on college students but not exclusively so. If you would like to be apart of this, either to supply information or to receive the final file, look up this post title on creactiv_voice for further instructions.

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September 12th, 2006

04:45 pm - Are you American, disabled, and need help getting or getting training for a job?
Vocational Rehabilitation is the service intended to help you with just that. Here is where you can find your local office

If you have a problem with Vocational Rehabilitation Services, you can contact CAP or Client Assistance Program. Find out about what CAP is here . Im working on a state-by-state spreadsheet of CAP agencies, since those sites dont seem to provide such. If anyone can find one that does, please contact me.

Tell us about your experience with Vocational Rehabilitation or CAP at creactiv_voice

OR Creactivists Voice on Yahoo!

OR Creactivists Voice on MSN
Current Mood: curiouscurious

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September 4th, 2006

08:03 pm
so i just got back from my local mda telethon not too long ago, and i've come to realize how many of my wheelchair bound friends are able to transport themselves either independently or with the help of a friend (not family). my family only owns a van with a hydraulic (i think) lift that is fairly hard to operate and only works well with my smaller power chair that i don't use daily. in addition to this, only my dad drives, so whenever i want to go somewhere else without his assistance, i have to ask a friend to take me in my manual chair.

i'd really like to have more independence than this. about 4 years ago i was tested to drive using hand controls, and was told a smaller wheel with lower weight and hand brake would be adequate. now, of course my mobility may have changed since then, and i may need more equipment to operate a vehicle, but i'm still worried about operating such machinery for the same reasons a friend of mine is: much of it is computerized, and such things can have errors that, if not serious, can still cause psychological worries because you don't know what's wrong with the car if "that little error light goes off". so, for those with modified vehicles, what are your experiences with their technological reliability? what kind of car would be most suitable and best quality car-wise for such modifications? specific models and makes, please, if possible.

now, considering this worry of mine, i'd still like to have a vehicle which my friend could transport me in without having to use my manual chair. i'm almost always with a friend or two wherever i go, so it'd be great if i could either have my family's current van (a ford windstar 2002-- i think that's the year) modified to accomodate a ramp and straps for my power chair, or buy a new van/car altogether to do the same modification to. if i had this modification, any one of my friends that drives (which, at my age, most do) can learn to strap my chair down, and just drive wherever we need to go. for those who have such a van/car adaptation: how much does it usually cost to get it done? are there any particular agencies that help install such equipment on vehicles? any other words of advice when considering this option of transportation?

much of the problem with either scenario is the financial cost of them. through conversations with friends, i've found out that the disabled person usually has to buy or locate the car to be modified, and then the vocational rehabilitation agency may pay for hand controls, etc. unfortunately, i'm not an united states citizen, but only have a greencard/permanent residency, so i don't even know if voc rehab applies to my case. the georgia voc rehab site only mentions being a georgia citizen, so i'll probably just have to contact them and ask if i can apply or not. any non-US citizens out there know of any resources available to us, or have any advice to offer in getting financial aid for such equipment?

thanks in advance!

(maybe x-posted, sorry)
Current Music: beirut-- postcards from italy

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September 1st, 2006

08:29 pm - Have you seen this?
Evictions off campus due to suicide attempts OR admission to a hospital for depression

I was outraged when I did. The last thing a depressed student needs is to be immediately tossed onto the streets. Yes I understand that these colleges/universities may not have the resources nor the necessitity to build mental institutions on campus, but certainly they should be required to treat their fellow human beings with some measure of dignity, if not even a trace of compassion. I do not accept the premise that they are seeking whats in the students' best interests. I wonder if in fact they are serving their own, in seeking shelter for their insurance policies away from legal storms. The problem for them is that within the ADA the legal standard for individuals with disabilities is the most integrated policies possible, in concurrence with the standards specified by the individual's treatment providers. There are certain factors that need to be considered here, such as whether or not the students could be defined under the law as persons with disabilities, etc. Even if these institutions of learning are safe due to these specific circumstances, it seems they are building their campus policies on quicksand rather than modern legal ethics.

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