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  #1  
September 27th, 2004, 10:43 AM
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Otherwise, do you have something that is limiting you or challenging you as parent but you are NOT letting overcome you! Tell us your Story/situation here.
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  #2  
September 27th, 2004, 10:51 AM
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I'm Dori and 30 years old. I have a 2 year old daughter. And I have Cerebral Palsy since birth and adult onset seizures (started at 20).

My CP has been a challenge indeed but not a limit in being a great Mom to my daughter. I use an electric wheelchair to help me take care of her. I had a special crib built for me and I use a computer desk/table as a changing table so I can get my wheelchair underneath. Only challenge I have is going out- we have to use a bus no big deal but it can be hard if she falls asleep on my lap and I need to drive.


-Dori
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  #3  
September 27th, 2004, 04:39 PM
tig2ger4lifemommy
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I have Myclonus A-Typical Dystonia. Say that ten times fast! Got my Dr to laugh when I told him to!

Seriously, my first condition(these are two seperate conditions) the Myclonus causes jerking and uncontrolable "seizure like" episodes, however I'm fully consious and yes I can drive as they only happen when I let my guard down completely or am so stressed that I my medication can't control them. They are hard to discribe. I've had this since I was born genetically, but it onset at the age of 5.

Whrn I turned 22, I started to get progressively worse! So, I went looking for the name of my condition and some help. As I got worse the Drs I saw switched me from med to med, cold turkey. I reacted badly! I became confused easily, I would wander into a room and not remember why I was there. It was the hardest time for me! I met DH at the beginging of all this. He ended up taking care of me at one-point in everyway, feeding, dressing, etc! He moved me in with him because no one believed the problems I was having, expect the Drs. During the nice drug roulette they played on me, one of the drugs triggered the Dystonia, which had been there but not active.

Dystonia affects the body in the opposite way. It cause the muscules to contract, where as the Myclonus cause them to move. The two kinda spar with each other on bad days.

Well after about two years of trying to find out everything I was digonased with the Myclonus, having the Dystonia appear and getting it diagnosed I was a completely different person, then before. I went from walking, running, jumping, etc to being in a wheelchair because the dystonia was so severe at the time that I was too unstable to even walk a inch.

When I learned that I was going to have my DD, I had been able to push myself to using a walker, then half crutches and finally knee-foot braces. So I was so exicted, I pushed and now walk without the braces, but do use the chair on bad days still or the half crutches which are easier around the house.

At times I find it hard to control the dystonia or the myclonus so I don't accidental trip or jerk my arm out from under one of my kids.

But I think that being who I am, stubborn( yes me!!) has made me try harder when I have a problem be it that my hands aren't coporating andI can't hold the bottle to push myself. I have found giving 150% to my children to be the greatest reward!

I almost forgot! I had Ulner Nerve Transpostion, which is where they move the major nerve in your elbow that goes to your hands, because it is entrapped. This has also cost me to loose some movement, but I can still catch DD running by, even if I can't hold her too long in my arms because of her weight with out support for my elbows.

Think I answered this question to death! Any questions, just ask! I'm open to questions and hopefully I can answer them!
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  #4  
September 28th, 2004, 12:10 AM
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Well I have quite a few problems only a few are disabilities but I hope it's ok to post here. I have 30% hearing loss in one ear and 15% in the other because of chronic ear infection at a young age, I wear a hearing aid only when I feel like it (I HATE them) and have learned how to read lips also lol.
I have pcos which has affected my metabolism, causing me to be very thin and sickly like (I've gained 2 lbs now putting me at 104 lbs).
One condition that can get severe I have is a Hereditary Imune Defeciancy. I get sick MUCH MUCH easier then normal people do.


Mine aren't as bad as any of yours but hopefully you don't mind me hanging out in this forum
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  #5  
September 28th, 2004, 10:27 AM
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Quote:
Originally posted by Alisteal@Sep 28 2004, 02:10 AM
Well I have quite a few problems only a few are disabilities but I hope it's ok to post here. I have 30% hearing loss in one ear and 15% in the other because of chronic ear infection at a young age, I wear a hearing aid only when I feel like it (I HATE them) and have learned how to read lips also lol.
I have pcos which has affected my metabolism, causing me to be very thin and sickly like (I've gained 2 lbs now putting me at 104 lbs).
One condition that can get severe I have is a Hereditary Imune Defeciancy. I get sick MUCH MUCH easier then normal people do.


Mine aren't as bad as any of yours but hopefully you don't mind me hanging out in this forum
Of Course Not! It seems you have overcame and are continuing to overcome challenges daily. Having hearing loss and other challenges that can slow you down a little can be hard at times definately when things are just not going your way. I am glad you join us and hope to see you around more! HUGS.

-Dori
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  #6  
September 28th, 2004, 10:34 AM
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Quote:
Originally posted by tig2ger4lifemommy@Sep 27 2004, 06:39 PM
I have Myclonus A-Typical Dystonia. Say that ten times fast! Got my Dr to laugh when I told him to!

I almost forgot! I had Ulner Nerve Transpostion, which is where they move the major nerve in your elbow that goes to your hands, because it is entrapped. This has also cost me to loose some movement, but I can still catch DD running by, even if I can't hold her too long in my arms because of her weight with out support for my elbows.

Think I answered this question to death! Any questions, just ask! I'm open to questions and hopefully I can answer them!
Thank You Becky for better explaining to us what condition(s) you have. And no you did not over do it. It is good to know. Thanks for joining us. HUGS

-Dori

P.S. I should add I also have a mild speech impairment so trying to say Myclonus A-Typical Dystonia. ten times fast!- forget it LOL
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  #7  
September 28th, 2004, 03:28 PM
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One thing that's really diffincult about hearing loss is that people seem to think if you don't answer them you are ignoring them and being rude. I can't tell if someone comes up to me on the left and it's hard to hear them ESPECIALLY is they are soft spoken. It happens a lot at like Dr's apointment and things where they call out my number or name. They have to repeat it at least 4 times most of the time and then glower at me when I finally realize they are talking about me. In school it was even more difficult because there are a lot of names similar to melissa and I would hear part of the name and think they were talking to me but they weren't. Reading lips does have it's advantages though LOL
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  #8  
September 28th, 2004, 06:29 PM
tig2ger4lifemommy
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Quote:
Originally posted by Us2GiRLs+Sep 28 2004, 12:34 PM-->
Quote:
<!--QuoteBegin-tig2ger4lifemommy
Quote:
@Sep 27 2004, 06:39 PM
I have Myclonus A-Typical Dystonia. Say that ten times fast!* * * Got my Dr to laugh when I told him to!*

I almost forgot! I had Ulner Nerve Transpostion, which is where they move the major nerve in your elbow that goes to your hands, because it is entrapped. This has also cost me to loose some movement, but I can still catch DD running by, even if I can't hold her too long in my arms because of her weight with out support for my elbows.

Think I answered this question* to death!* Any questions, just ask! I'm open to questions and hopefully I can answer them!*
Thank You Becky for better explaining to us what condition(s) you have. And no you did not over do it. It is good to know. Thanks for joining us. HUGS

-Dori

P.S. I should add I also have a mild speech impairment so trying to say Myclonus A-Typical Dystonia. ten times fast!- forget it LOL [/b]
I also have a speech problem, I believe it is linked to the Myclonus. My speech gets slurred(like I've been drinking) and my soft spoken voice(I'll speak up if I ever met you Melissa!!! )goes even lower in tone.
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  #9  
September 28th, 2004, 07:44 PM
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Hey Becky thanks for that. Even if you do talk low as long as you are facing me I could read your lips lol. Just don't sneak up on me lmao! I HATE when Joe does it he thinks it's funny to scare me half to death
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  #10  
October 26th, 2004, 08:53 AM
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Almost a year ago I was diagnosed with MS... while pregnant with my youngest baby. Its been chalanging thats for sure. But I'm lucky. I have a husband that totally understands. His mom has Myociniogravis (no idea on the spelling so I sounded it out lol) It has alot of the same symptoms and such as MS but the difference is that MG is regressive, while MS is progressive (gets worse over time). LOL so he's experienced with this sort of thing.

I can't say that I've overcome anything yet, cause honestly I haven't really tried lol. With the weather change its been a bit rough, because my body is hypersensitive. I'm hoping that this will change once I start on my meds. Which I can't do until I ween Hunter. He's proving to be a challange on that end. I know most of the problem is me. I'm not emotionally ready to ween him even though mentally I know that it has to be done so I can be a great Mommy again. LOL and it would be nice to beable to have a shower with out my right foot twitching like crazy.

I guess my biggest challenge is that I don't look disabled. I'm young (27) and most days you can't tell. But as soon as I get tired my body goes to pot lol. I've had people cut me off in the grocery store and then glare at me cause I'm moving slow. Grrrrr. I joke to hubby about sticking a hadicapped placcard to my but when ever we go somewhere... but sometimes I'm actually serious.



BTW>>> this is a great idea for a board. Its nice to beable to talk to people whoi have a basic understanding of what I'm going through and who can offer constructive advice.
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  #11  
October 26th, 2004, 09:20 AM
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Quote:
Originally posted by armymom@Oct 26 2004, 10:53 AM
Almost a year ago I was diagnosed with MS... while pregnant with my youngest baby. Its been chalanging thats for sure. But I'm lucky. I have a husband that totally understands. His mom has Myociniogravis (no idea on the spelling so I sounded it out lol) It has alot of the same symptoms and such as MS but the difference is that MG is regressive, while MS is progressive (gets worse over time). LOL so he's experienced with this sort of thing.

I can't say that I've overcome anything yet, cause honestly I haven't really tried lol. With the weather change its been a bit rough, because my body is hypersensitive. I'm hoping that this will change once I start on my meds. Which I can't do until I ween Hunter. He's proving to be a challange on that end. I know most of the problem is me. I'm not emotionally ready to ween him even though mentally I know that it has to be done so I can be a great Mommy again. LOL and it would be nice to beable to have a shower with out my right foot twitching like crazy.

I guess my biggest challenge is that I don't look disabled. I'm young (27) and most days you can't tell. But as soon as I get tired my body goes to pot lol. I've had people cut me off in the grocery store and then glare at me cause I'm moving slow. Grrrrr. I joke to hubby about sticking a hadicapped placcard to my but when ever we go somewhere... but sometimes I'm actually serious.



BTW>>> this is a great idea for a board. Its nice to beable to talk to people whoi have a basic understanding of what I'm going through and who can offer constructive advice.
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[/quote]
Welcome Denise (armymom),

Thanks for sharing your limitations with us and welcome to the board. You will be a great assest to our board and I hope you can find the support and the advice you need as well give it. :-)
-Dori
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  #12  
November 6th, 2004, 09:04 AM
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What a great board!
I can certainly identify with you Melissa. I am hearing impaired also! I have a 60% loss in my left ear, 70% loss in my right. I have behind the ear hearing aids, but I never wear them anymore- they make my brain vibrate, lol. That's literally what is feels like! It's so much easier for me to read lips and guess, I'm actually worse with the hearing aids. The only set back that I have is that when I'm in a situation where I'm talking to more than one or two people, I get a headache trying to keep up with everyone's lips. So, I get very tired after about an hour of that, lol. I'm not in that kind of situation too much, just at church, and at my parents support class (I have a disabled daughter). I sign fluently in SEE sign, as does my oldest daughter. My dh is hearing and signs some, but he usually just makes me laugh when he tries, rofl! He knows enough sign to use with me, he's just by no means an effective interpreter, lol. I don't have a speech impediment (sp?) though. My hearing loss was very gradual. I do have nerve damage from infancy, but I don't think it's a very significant loss because I remember hearing things as a child that I no longer hear now. The rest of my hearing loss came from chronic ear infections, and scar tissue on my ear drums. Aside from that, I am also a classically trained vocalist (since I was about 10 year old, and hearing). Vocal training is very much the same as speech therapy with some added vocal exercises. I have to concentrate when I'm speaking, so sometimes "deaf girl" (as I call it) will come out, but I can usually control my speech so that nobody can even tell. How nice that this board is here, with people who can understand! I will try my hardest to be active on this board, though it may go in spurts since we are very busy with getting my daughter a diagnosis right now.
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  #13  
November 6th, 2004, 10:27 AM
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Welcome Aboard Krista Glad you found us! I hope you will find the support you need here as you will find out we have a great a group here. You will be a great assest here as well.

-Dori
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  #14  
December 11th, 2004, 11:55 PM
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I had a friend who hearing loss. She had a friend design this thing that she wore on her hip at all time. It's like baby monitor and when the baby cries it would vibrate.


I also want to say that you guys are amazing!
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  #15  
September 19th, 2005, 03:11 PM
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Hello! My name is Cory, I am 20 years old. I live in PA with my amazing boyfriend. I am 10 weeks pregnant with my first.
My boyfriend has muscular dystrophy, I believe he has Becker's MD. I just came across this forum, and I haven't seen a forum with parents with disabilites. I know I am not disabled myself, but I would love to be welcomed in this forum. It seems like it would be a great place for me to talk about different things, and get to know more people.
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  #16  
October 12th, 2005, 10:48 AM
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I'm new to this board & just found this forum. I've been on here for weeks but was reading it as mommies with disabled children

Obviously, 1 of my disabilities is being a little slow

I have a severe case of Raynaud's. Basically, when I get cold or stressed the blood vessels in my hands & feet constrict stopping blood flow. It's very painful. Even my nose is now affect & my gums.

How is this challenging, well I can't be outside if the temp is under 65. Hard to do when you live in Chicago. I can't hold cold cans of pop or basically anything cold. I dress like an eskimo. Turtlenecks & wool sweaters from Sept - May.

I have handicapped parking because with no blood flow in your feet it's hard to walk. I get a lot of dirtly looks & comments because I don't look handicap. Although, people have been polite enough not to attack me when Lucy's with me.

Lack of blood flow to tissue causes permanent damage. I get these nasty extremely painful sores that take forever to go away & then the tissue never comes back. Very few of my fingers are round anymore. I have receeding gums & have to have gum transplant surgery every so often.

But on the bright side, I'm living with it. I just have to make adjustments. Lucy at 3 is just started to realize that I'm different. I do have problems over dressing her. She doesn't need to bundle up like I do but I forget


PS. Hi Melissa - I know you from another board.
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  #17  
December 7th, 2005, 11:37 AM
mrobinson
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One thing that's really diffincult about hearing loss is that people seem to think if you don't answer them you are ignoring them and being rude. I can't tell if someone comes up to me on the left and it's hard to hear them ESPECIALLY is they are soft spoken. It happens a lot at like Dr's apointment and things where they call out my number or name.[/b]
Quote:
I guess my biggest challenge is that I don't look disabled. I'm young (27) and most days you can't tell. But as soon as I get tired my body goes to pot lol. I've had people cut me off in the grocery store and then glare at me cause I'm moving slow. Grrrrr. I joke to hubby about sticking a hadicapped placcard to my but when ever we go somewhere... but sometimes I'm actually serious.[/b]
Quote:
I have handicapped parking because with no blood flow in your feet it's hard to walk. I get a lot of dirtly looks & comments because I don't look handicap. Although, people have been polite enough not to attack me when Lucy's with me.[/b]
Girls, thank you for posting your stories.. it helps people like me!
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  #18  
December 12th, 2005, 02:21 AM
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Quote:
What a great board!
I can certainly identify with you Melissa. I am hearing impaired also! I have a 60% loss in my left ear, 70% loss in my right. I have behind the ear hearing aids, but I never wear them anymore- they make my brain vibrate, lol. That's literally what is feels like! It's so much easier for me to read lips and guess, I'm actually worse with the hearing aids. The only set back that I have is that when I'm in a situation where I'm talking to more than one or two people, I get a headache trying to keep up with everyone's lips. So, I get very tired after about an hour of that, lol. I'm not in that kind of situation too much, just at church, and at my parents support class (I have a disabled daughter). I sign fluently in SEE sign, as does my oldest daughter. My dh is hearing and signs some, but he usually just makes me laugh when he tries, rofl! He knows enough sign to use with me, he's just by no means an effective interpreter, lol. I don't have a speech impediment (sp?) though. My hearing loss was very gradual. I do have nerve damage from infancy, but I don't think it's a very significant loss because I remember hearing things as a child that I no longer hear now. The rest of my hearing loss came from chronic ear infections, and scar tissue on my ear drums. Aside from that, I am also a classically trained vocalist (since I was about 10 year old, and hearing). Vocal training is very much the same as speech therapy with some added vocal exercises. I have to concentrate when I'm speaking, so sometimes "deaf girl" (as I call it) will come out, but I can usually control my speech so that nobody can even tell. How nice that this board is here, with people who can understand! I will try my hardest to be active on this board, though it may go in spurts since we are very busy with getting my daughter a diagnosis right now.[/b]
Hey sweetie! I've had my hearing retested since I posted. It's gotten MUCH worse. I now have 50% loss in both ears. My daughter is hearing impaired also and Stormy has about a 90% chance of being hearing impaired. I'm supposed to have Hearing Aids but because of insurance will not be getting them untill tax time. Freja and I are both learning ASL
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  #19  
December 12th, 2005, 07:19 PM
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Quote:
Quote:
One thing that's really diffincult about hearing loss is that people seem to think if you don't answer them you are ignoring them and being rude. I can't tell if someone comes up to me on the left and it's hard to hear them ESPECIALLY is they are soft spoken. It happens a lot at like Dr's apointment and things where they call out my number or name.[/b]
Quote:
I guess my biggest challenge is that I don't look disabled. I'm young (27) and most days you can't tell. But as soon as I get tired my body goes to pot lol. I've had people cut me off in the grocery store and then glare at me cause I'm moving slow. Grrrrr. I joke to hubby about sticking a hadicapped placcard to my but when ever we go somewhere... but sometimes I'm actually serious.[/b]
Quote:
I have handicapped parking because with no blood flow in your feet it's hard to walk. I get a lot of dirtly looks & comments because I don't look handicap. Although, people have been polite enough not to attack me when Lucy's with me.[/b]
Girls, thank you for posting your stories.. it helps people like me!
[/b]
I am glad you found a board that you can find common ground with mrobinson as that is our goal here to let others know of all types and diversity of disabilitiies that are out there, so we can be aware of them as well help educate others. And most of all be a good support system here at Justmommies. mrobinson if I may ask what is your limitations or what is your invisible disability called because I am also trying to do a website of various disabilities that I have come accross.

-Dori
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  #20  
May 16th, 2006, 02:11 PM
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I have fairly severe Rheumatoid Arthritis but currently have it under control with medications. I know it can effect my (future) parenting, but only if I let it!!!
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