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August 13th, 2008

10:35 am - Darius Goes West - Together we can cure Duchenne Muscular Dystrophy

Hey Everyone,

      We made an award-winning, critically-acclaimed documentary about Darius Weems, our friend who has Duchenne muscular dystrophy (DMD).  I promise the film will make you laugh, cry, and inspire you to go out and do something.  We are currently working full-time for Darius Goes West to raise money for DMD research.  Our goal is to sell one million DVDs in one year. With $17 from every $20 DVD going straight to researchers and the other $3 going to manufacture more DVDs, we hope to raise $17 million--seventeen million dollars—in the quest for a cure of this terrible disease.   Please check out our “Vehicle” clip.  Starting on September 5th we will be featured on YouTube’s homepage, which we hope will give us a great jump start into helping cure this disease.  You can help us by spreading the word, forwarding the vehicle to your friends, hosting a screening of the movie, or just buying and enjoying a dvd.  I know you won't regret checking this out.

The Vehicle Link

If you would like to contact me my e-mail is jlhharmon@gmail.com and our website is http://www.dariusgoeswest.org

Thanks for your time,

                                        John Harmon

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July 13th, 2008

06:31 pm - Ummmm
Volf? Do you have a reason for spamming this board with random articles? I mean, if you can draw tidbits of knowledge that will be important to Muscular Dystrophy, cool. But if you just want us to know you know how to write; how about a weekly list of articles found on your LJ? Or at least a cut tag.


So, something on topic.

Anyone else miss camp? I miss bits and pieces... Then I remember how much of a pain it was to just use the bathroom. But the quiet time after lunch, I miss that. Except when A broke my ankle when playing with R's joystick. :)

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July 3rd, 2008

11:28 am
Just curious... What seat cushion do you swear by? I can't really trust the wheelchair shop I would normally go to, and my Jay 2 is wearing out. I need something really cushy yet discrete. (Sitting on a feather pillow will not impress at job interviews.) 

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March 7th, 2008

10:36 am - Request for study participants.
Study Title: Body Esteem of Women with Physical Disabilities
Investigator: Laura Glowacki
Date: 1/26/2008

You are being asked to participate in a research project conducted by a student in the Social Work Department at Western Illinois University. Please

read the information below and ask questions about anything you don’t understand before deciding whether or not to take part in the questionnaire.

This research questionnaire will explore attitudes of women with physical disabilities about their body esteem. Subjects who choose to participate should

be female and aged eighteen years or older who have a physical disability. The researcher respectfully requests that anyone not meeting those criteria

refrain from continuing to answer the survey. Read more...Collapse )

This information has been X-posted to the following communities: spina_bifida, weknowdisabled, cerebral_palsy, all_disability, musc_dystrophy,

ever_perceived, no_pity, and gimpgirl.

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February 27th, 2008

03:22 pm - Interviews
Posted for my mom. She has an LJ, just never uses it.

Hi, I'm tv_elf's Mom and I'm writing an article for Quest (MDA's magazine) on what, for lack of a better term, I'm calling sensory deprivation.  Have you ever noticed how many articles there are about caregiver burnout, but nothing about what happens to the care receiver when the care giver doesn't acknowledge that you are a real person. I'd appreciate responses on one or both of the questions below--soon--my deadline is Monday.  Thanks! 
1. Sensory deprivation, for this article, is a lack of  the great emotional feelings you get when someone hugs you, holds you hand, gently brushes your hair, etc. Sometimes someone takes care of your physical needs, but it is perfunctory and feels like they'd rather not.It may make you feel a bit like a burden, maybe unloveable and at some level you just wish they would treat you as if they actually see you--not just a series of chores to be done.  (P.S. for adults that can include sexual relations) Tell me a bit about your experience and what--if anything--you did about it.
2. Because of the severity of your disability, you might not remember the last time you felt the grass, enjoyed being in a pool or lake, experienced the thrill of sliding down a sliding board, or riding a ride at  theme park. Have you (or your caregiver) done anything to help you enjoy the sensory experiences in the world?
Please be sure to include your name, where you live, diagnosis, age, and whether you have a picture you could send in.
Thanks so very much!
Donna A.

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October 9th, 2007

09:31 pm
Anyone else watch House? One of the writers has a child with SMA. So tonight's patient has SMA 3 and some other dread disease.

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August 27th, 2007

01:00 pm - Art4MD
(I need to get word out about this wonderful organization started by my best friend.. The myspace link is at the bottom of the page.)

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July 19th, 2007

06:13 pm - FSHD and my experience with pregnancy
I haven't done very good at keeping up with this community so I will re-introduce myself for all the new comers and old forgetful ones as well.  

I'm Carly, a 21 year old female from Nebraska.  I live in a small town not far from the Nebraska Kansas border, in a house my boyfriend and I bought last year.  On May 22, 2007 I had a healthy baby girl, Taylissa.  I love tattoos and piercings...blah blah blah...anyway on to my reason for posting...

When I was looking for information reguarding my FSH and becoming pregnant I could not find anything.  I couldn't even find information reguarding M.D in general with pregnancy.  Being a female, it was only natural for me to wonder if I could have kids and what the effect on my body would be.  I started to ask doctors, and no one had any answers for me.  I knew they wouldn't be able to magically go ahead in time and tell me how my body would handle everything, but they couldn't even give me a general idea.  The only thing they could tell me was that my children have a 50/50 chance of carrying the FSH.  The thought of that scared me, but not for long.  After all any person in the world that has a child could have one that is disabled.   I wasn't giving up on my dream of having a family.
In August of 2006 I ended up in the emergency room and I was informed that I was pregnant.  3 days later I found out I miscarried.  They did not point their finger at the M.D for the cause of miscarrying.  Infact more women miscarry than is actually known.  In October I had a dream about being pregnant again with a little girl, I took a test and sure enough.  I was pregnant!
The first 3 months were rough on me due to the morning sickness.  I tend to get weaker than those without M.D when I get sick, so this was pretty hard on me.  I was constantly taking naps, however it didn't make my muscles any weaker.  The 3-6 months weren't to bad.  I didn't have any swelling, no high blood pressure, the baby's heart rate was good, ultrasounds looked good ect.  As far as mobility, I am in a wheelchair during the day so most couldn't even tell I was pregnant.  My transfers weren't affected, although having a big belly did get awkward and knocked me off balance a few times.  I also have a spinal fusion with harrington rods, so this helped support my back and I didn't have hardly any back pain.  I went to a high risk OB doctor from a University hospital and she did a very in detail ultrasound to look for any sort of defects in the fetus.  I also had a blood test done to check for certain conditions as well.  All turned out perfect and she told me to just continue seeing my regular OB doctor.  At about 7 1/2 months the OB doctor discussed ways of delivery with me and we decided a scheduled c-sec would probably be my best bet.  By doing this there would be no worries about the ability to have an epidural with the rods in my back, or me getting to fatigued to push.  There was only one downfall to delivering this way and that was having to be put completely under to have the surgery.  I live out in the middle of no where so I got worried about the local hospitals ability to handle me and my condition if something were to go haywire.  I wanted to make sure all bridges were covered before we got to them.  I met up with the anethesiologist at the local hospital as well as a lung doctor.  I was informed they may have to put the tube down my throat while I'm awake so if there is any problem they aren't risking me and the baby.  I was also told about the posibility of having to be on a vent for a day or so afterwards.  This had me worried but there wasn't much I could do so I just tried to relax about the whole situation.  At month 8 sleeping started to get very uncomfortable, but my muscles were still showing no change.  I was however starting to watch what I ate so I didn't gain a bunch of weight that would affect me afterwards.  We also set up a delivery date for June 5th.  Everything was set and ready to go.  About half way through month 8 (around May 15th-ish) I started to get a slight cramping feeling while I was sitting up.  I put in a call to the doctor despite it being 1 AM, and I was told to get to the hospital so they could check things out.  Once they took some blood and hooked up a fetal monitor, they told me my blood pressure was way up, my blood counts were messed up and it was showing signs of liver and kidney problems if it continued.  As long as my blood pressure was down everything was ok, which resulted in best rest.  I was only on bed rest for about 3 days before I started to go crazy asking for other options.  I ended up having an Amnio done so they could see if the babys lungs were mature enough to take it early.  They have to rate at atleast 55 to take them out of the womb without complications, and my baby rated 120.  It was more than healthy enough to deliver.  Less than 2 days later I was on my way down to the Operating Room and getting prepared for surgery.  When I woke up I was in ICU with a tube down my throat.  They were taking every precaution and wanted to make sure my lungs were stable before taking me off the vent.  Not long after waking up they took the tube out and I saw my baby girl.  Being a little pre-mature she wasn't very big (5lbs 1oz, 19 inches long) but she was so amazing and healthy.  The M.D didn't seem to hinder the healing process or anything, infact I was up sitting in my wheelchair less than 24 hours afterwards with the pain meds discontinued.  Over the healing process both in and out of the hospital I kept an eye on my M.D and watched for any changes that occured.  Nothing changed.  I had a scar on my belly and that was about the most of it.  I was back to my normal weight before I even left ICU, and everything was working just the same as before becoming pregnant.  Everything went remarkably well.  Infact, so well that I've already made up my mind I will have more than one child.
My purpose for sharing my experience with you is so you have a little bit more insight about M.D in pregnancy, so you aren't as blind as I was.  I honestly believe it is 100% natural for every female to want a baby of their very own.  If you are disabled and have given up on the thought of children, I really encourage you to reconsider.  I understand some people can and some can't have kids, but so many just gave up on the thought simply because of a disability, or the fear of an unknown outcome.  Please don't let something silly stop you.  The same goes with every dream, NEVER GIVE UP!
Even though everyone is different and no ones body handles things the same as someone else, I hope my experience helped.  If you or anyone you know have any questions reguarding M.D and pregnancy please don't be afraid to ask.  I will try to answer them.

UPDATE: Taylissa has not been checked for FSH so we do not know if she is a carrier yet, in time we will find out.  She is going to be 2 months old on July 22, 2007 and she is as healthy as can be (7 lbs 6 oz).  My boyfriend Brad is a great help with her and our families are as well.  That is one thing I'd have to stress about being disabled and having a baby...support is much needed because it is exhausting!  My FSH has still shown no changes.  My weight hasn't changed either.  Everything is going well!

Taylissas picture

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July 15th, 2007

05:42 pm - Questions

New member here, with a specific purpose for joining.

I have Spinal Muscular Atrophy. I'm 25, gay, jobless, not currently going to college, and living with my sister. The last three I hope to change. The problem with the first two I wish to change is that I'm totally clueless about what my options are. The last one, not so clueless but at the same time I could use some advice or just hear some experiences on independent living and learn from those.

OK, so I know there's vocational rehab for the job, and possibly for college. The living situation isn't so bad, but I've always wanted to live on my own and besides that, there are goals my sister has that she can't achieve because she's taking care of me. My major problem is trying to figure out what I want to do in life.

Anyway, so I want to go back to college. But I'm limited to what I can do. My mind has never been the problem, my physical limitations have been. However, my main problem is that I can't choose what I want to do. So a friend suggested I ask some people with my condition what they went for and see if anything appeals to me. So, anyone here with MD or any other disability, what career choice did you go for, and why?

Also, any advice on scholarships and such? Any advice on moving out and living independently/semi-independently? Any advice on how to find a good personal assistant that won't do a half-assed job? Any advice and shared experiences are very appreciated!
Current Mood: contemplativecontemplative
Current Music: The End Of Medicine - The New Pornographers

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June 4th, 2007

09:31 pm - interviews needed

I'm doing a summer research project in association with my college, Occidental College. The main premise is I'm researching various physical disabilities and how they affect sexuality for people with disabilities. I'm researching medical information, but as you know. just researching medical information does not give us the whole picture. To supplement, I'd like to interview real people with disabilities to get a firsthand account.
A little background on me: I'm 24 years old and I have quadriplegic cerebral palsy. My major is Gender Studies and I have been interested and researching in the field of disability and sex for many years. I have discovered that there is not a lot of good sex-positive research and information available. So that's basically where I'm coming from.
I need all people, from all genders, sexual orientations, age groups, abilities, and levels of experience. This interview can be anonymous If you are interested, please reply by filling out the preliminary survey questions below.

1. How do you identify based on gender?
2. What disability do you have?
3. How old are you?
4. Describe your sexual orientation.

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