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Old 09-24-2006, 08:08 PM   #1
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Default What is your....

disability and how old are your children.

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Old 09-24-2006, 09:13 PM   #2
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Hi there. :-) I have MS and have all sorts of challenges from that. I am a single parent of three children -- ages 15, 11, and 8.
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Old 09-25-2006, 07:22 AM   #3
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Hey, everybody!!

I'm LIZ and I was born with hydrocephalus nearly 40 years ago. As a result of the hydro (or possibly my delivery ), I also have epilepsy which is well-controlled with a small dose of a single med. As of right now, it's been 26 years since I last had any shunt surgery, and I experience few issues from the hydro, but the ones I have present a challenge in balancing my "shtuff" with my son's autism and all he needs. I am forgetful, can't follow oral directions for nuthin', and multi-tasking is still a challenge, although I am improving.

For anyone unacquainted with "hydro," it occurs when the fluid in the brain gets trapped inside, resulting in swelling and compression of the tissue. About 25% or so of us have at least one seizure along the way, and of those, about 35-50% will go on to develop epilepsy. Due to my relatively uncomplicated hydro history, I'm inclined to think that my delivery with high forceps is to blame for the epilepsy, although my hydro is probably congenital. In any case, I'm nearly 40 yo, so none of that matters now. I'm just fortunate that this shunt (surgery done to treat hydro) has worked wonderfully after five surgeries before kindergarten. The shunt is a silicone-rubber or plastic tube that is inserted into the blocked ventricle, probed down one side of the torso (inside ), and into the peritoneal cavity (stomach area) or other "ending" drainage site, such as the heart atrium. The fluid is then absorbed into the bloodstream, same as yours.

So...there you have me, in a nutshell. Any questions from anyone are welcome and encouraged. My kids are 15 and 12, as noted in my siggy.

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Old 09-28-2006, 09:14 PM   #4
Hoosier Mama?
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Hi Everyone....

I'm 48 and mother to an active six y/o son, who already thinks he knows everything. Lord help me when he's 14 or so.

I'm currently an incomplete paraplegic, walking with a single point cane and a full leg brace, using a wheelchair when at home.

I was born with spina-bifida and scoliosis. The paralysis followed a spinal cord de-tethering three years ago. It was my second cord surgery, and now we're suspecting that it has retethered yet again...waiting for the MRI report.

If tethered, I'm faced with two not-so-nice options. Either do nothing and allow myself to go completely paralyzed in slow-motion, or risk another very risky surgery again. I've had 18 surgeries total...most disability related, but not all...and I've never been really scared with any of them, but the thought of going through all this again terrifies me. I'm just getting too old for this crap! LOL. The last one lasted 12 hrs., then five days later, another 12 hrs. I do think it traumatized me somewhat. And to be honest, I don't want to put my son through it again either. It was hard on all of us.

But he's my little rock. If not for him, I've no doubt that my feet would never hit the floor on most days. Best PT in the world!
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Old 09-29-2006, 06:59 AM   #5
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I love your name, btw! Really cute.

So...you have SB? Any hydro? I can't imagine trying to parent a 6 yo when you have limited mobility. I have never been a good runner, but at least I could chase my son when I had to at that age. He's high-functioning autistic, so there were many chases.

I agree that you'll have your hands full when your little guy gets to the teens, but lemme also reassure you that because of this experience, he will likely be a more patient, compassionate, and accepting young adult. My daughter is 15, and although I do get plenty of teenage sass and some cluelessness from her about what I deal with, I also get a lot of maturity and assistance with her brother (when she's home ). Just keep being open to questions, and follow his cue. He'll let you know what he needs from you as long as you're open to any questions he has.

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Old 10-14-2006, 07:46 PM   #6
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Hi all...

I have quite a bit of medical issues.. I've been trying to get disability for almost 6 yrs (in Dec). Here is the list I keep on a file/paper that I give the doctors (especially when its a new doctor) when I see them and they ask what I have or deal with..

1. BCCNS - Basal Cell Carcinoma Nevus Syndrome (Gorlin Syndrome)
2. Chronic (severe) GERD - Short segments Barretts
3. Asthma
4. DDD (Degenerative Disc Disease) in cervical, thoracic and lumbar
5. Allergies
6. Hypothyroidism
7. Spina Bifida Occulta - cervical and lumbar
8. Depression
9. Balance Disorder
10. Lumbosacr spondylolysis
11. General Osteoarthrosis
12. IBS
13. Other bowel disorders also - similiar to dumping
14. Migraines and other headaches
15. Scoliosis, Kyphosis, Lordosis
16. Bladder incontinence
17. Sleep apnea
18. Neurological - Right sided weakness, memory problems, balance, comprehension, itching, swallowing, fuzzy vision
19. Athletes feet
20. Obesity
21. Obstructive Lung Disease - get bronchitis and pnuemonia easily and frequent
22. Mild (low normal) hearing loss in right ear and always feeling "plugged"
23. Implants in ankles for arches
24. Skin Cancer
25. Herniated discs
26. Seizures
27. Ataxia
28. Arthritis
29. Bowel incontinence
30. Peripheral Neuropathy (hands and feet)

I have 4 miracle boys. I wasn't suppose to be able to have children because of a deformed uterus. They are 9,11,14, and 16. The 9 and 11 yr old have my rare diseas (Gorlin Syndrome) along with other stuff listed in my signature. Its nice to meet you all.

Gina Marie
GinaMarie - Basal Cell Carcinoma Nevus Syndrome (BCCNS) also known as Gorlin Syndrome, Multiple other stuff, Mother to 4 miracle boys.
Nathan - Adhd,
Caleb - Adhd,
Adam - BCCNS, Adhd, Chiari Malformation,PDD-NOS
Noah- BCCNS, Adhd, Chiari Malformation, Bronchial Stenosis, Asthma
Thank you Jesus!! He walks with us thru all of this because he will never leave us nor forsake us!! He is my BESTEST friend!!!

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Old 10-15-2006, 03:32 PM   #7
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I'm 45 years young and I have Multiple Sclerosis (MS). I was dx'd with this disease in 1986. I occasionally use a cane otherwise to most I look perfectly normal.

I have 2 children - my son is 16 and my daughter is 14.
Dx RRMS 1984
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Old 10-23-2006, 04:58 PM   #8
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Hi, everyone! I'm nearly 60, and have raised 3 wonderful children, who have presented me with 7 grandkids. I have myasthenia gravis, underactive thyroid (used to have Graves' Disease, overactive thryroid), Osteoporosis, and radiation damage from treatment for cancer. The MG has been the big limiter. Although the radiation proctitis, with the many urgent trips to the bathroom, is beginning to be a real PAIN!!!!
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Old 10-28-2006, 09:39 PM   #9
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Default Mine is Peripheral Neuropathy

Hi there

I have Peripheral Neuropathy and also suffer from muscle weakness.

I have a very acive 2.5yr old big strong boy who is a real handful. If it werent for my beloved husband I wouldnt cope. He is my son's main carer and my carer too when I am too sick to care for myself

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Old 02-17-2008, 11:47 PM   #10
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I won't list all of my challenges...but I will say I'm in tons of pain...I have a son 24 and daughter 22.

My hubby has MS and has a son 29, daughter 27 and another daughter 22. Four grandchildren 8,7,6 and 1 years old...
My best friends live in my computer....
Suffered with back problems since birth...7 back surgeries to date, the last one being on 5/13/2015. Fibromyalgia, PTSD, Chronic Pain

“Being my sweethearts full-time care partner, I have to remind myself, when some well-meaning friend or relative questions my methods or motives, that I know more than they do because I Live this life 24/7, and they only come for short visits.” Tamiloo

Gotta love my Olhipie! Dx'd RRMS 1986, SPMS 2004

Watch my Olhipie Skiing....

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