Moms with Neurological Disorders

Hello. My name is Jackie. I wanted to create a forum for supporting Moms with any kind of Neurological Disability. Ive been searching the forums for quite a while now and have found little in here for mothers who may be struggling through pregnancy or trying to raise children while fighting disabilities such as Parkinsons, MS, Serebral Palsy, or any other neurological disorder.
I want to find other moms like me. I want a forum where we can talk about our experiences as moms, share our problems and concerns, share advice. And support for others like ourselves or even just plane vent if we need to about problems we all face with our day to day lives.
I want to create a respectful forum. Please if we talk amongst ourselves let it be encouraging and supportive.
There are mothers here who have struggled like i have to have and raise children. I want to hear your stories. Please i hope everyone have a very nice day and take care, always. Thank you!

I have neurofibromatosis type 1
I have a 2 year old son and I've been married for 3 years

What kind of disorder do you have?

<blockquote><b>Quoting *PeanutButter*:</b>" I have neurofibromatosis type 1 I have a 2 year old son and I've been married for 3 years What kind of disorder do you have?"</blockquote>




Hello there. I have Dystonia. Ive had three boys and have a surprise on the way.   nice to meet you! Hope youre having a good day

Hi! I was so happy to see this thread. I was diagnosed with MS in 2007, about 6 months after marrying my amazing husband. We were so leary of TTC because of the risks of severe relapse after birth. We did decide that expanding our family outweighed the risks, and gave birth to our 1st daughter in 2010. I did end up relapsing when she was 3 months old and had to start my injections and seizure meds immediately, which caused me to have to stop breast feeding. I am now pregnant with our 2nd daughter, due in May with a scheduled c-section on April 30th. I feel a little more emotionally prepared this go around, but it's still scary with the unknown. I wouldn't change our decision to have kids for anything in the world, and just take everything day by day with the most positive outlook. I'm looking forward to hearing from other moms out there that are dealing with or have dealt with similar situations. =)

<blockquote><b>Quoting ~Barefoot Birdie~:</b>" Hi! I was so happy to see this thread. I was diagnosed with MS in 2007, about 6 months after marrying ... [snip!] ... I'm looking forward to hearing from other moms out there that are dealing with or have dealt with similar situations. =)"</blockquote>




Hello! So glad you found us! Welcome to the thread! I fully understand the questions faced when TTC. We didnt find out untill my eighth pregnancy what was going on with me. When we did they advised we abort the pregnancy because the effects of the medicine they said i HAD to take might have on the unborn child.
Before that we had already struggled so much to have children. I had five miscarriages under me, and had delivered two premies already. One at twentyfour weeks, RIP twelve days later, and the other after being placed on very early strict bed rest and a cercloge at thirtysix weeks. At the time he was our only surviving child and after all we went through i couldnt bring myself to abort one on purpose.
They did have me start treatment during the pregnancy and they all told me if the meds didnt kill the baby the birth defects it could develope would. Shortly after that we lost the babies twin, but after a long terrifying pregnancy he ended up being born also eightysix weeks and perfectly meraculously healthy!
After that we thanked god for our two miracle boys and started being more careful in the future not knowing if it would be safe to have any more. We also descovered my children might have been at risk of getting what i had. Only recently did we find out they would not.
It was a surprise to find out we were expecting again. I went nearly half way through before we found out we were pregnant. Unfortunatly most of the "normal" pregnancy signs are very easily explained away because of my disorder. As far as they can tell this baby seems to be doing okay. Im also on yet another different treatment plan that they think might be less dangerous to the baby. Still what all could go wrong is yet to be known. We do plan on getting tied after this. I have reached a point where the risks and stress are taking too much toll on us all. We are extremely greatfull for what we have.
I think its great you had the courage to TTC. You are very inspirational  

What an amazing story you have. We have also decided to have my tubes tied after this baby is born. I look forward to getting to know you and the other mamas !

I am so glad to have met the two of you today! It is encouraging to me that we all know we are not alone. I hope to find more who know our struggled anf victor.wies. We have disabilities but we are resiliant and resoursfull. Traits we can be proud to pass on to our children. I will do everything i can to keep this thread moving. I hope you can be encouraged to. Bright blessings to you both this evening. And as always, take care.

Now that I have more time ill post my story
I was diagnosed with NF1 when I was 3 months old,I had severe Boeing of the tibia and fibula. It would spontantously fracture and I would have to have bone reconstructive surgery using my hip bones. Which meant a body at for 6 months at a time.at the age of 7 I had tto have it amputated,I made the decision to have a better quality of life.when they amputated it they found nothing but mangled nerves and tumors.my body went into shock,I suffered from PTSD and had to have a blood transfusion.i couldn't sleep and had night terrors and flash backs,I was on muscle relaxers,sleeping pills,antidepressants and pain killers and had to go to physical therapy.a few weeks later I had to have another surgery on my leg which set me back a few more months.which at the age of 7 is a lot to take on. I got better and learned to walk and was off all medication by the age of 9.
Once I started going through puberty I had major issues,tumors started forming on almost all the nerves in my body.my legs,arms and head. I also started having problems with my leg bones and had more surgeries to correct it.
I've had 9 surgeries on my right leg,one on my left and 3 on my head.
They've had to remove large tumors from my skull,one of which is still partly in my skull because they couldn't continue with the surgery from major blood loss.i got so sick from all the surgeries and pain medication I wasn't able to function for 6 months. I couldn't eat,use the bathroom,walk,bathe or move without assistance. I also stopped breathing in my sleep.

I'm proud to say I've been surgery free for 4 years.
It is a struggle,somedays I cannot walk. I couldn't wear my prosthetic for a year when I was pregnant,which means I was hobbling around on crutches 9 months pregnant and taking care of an infant for 2 months
Although I hate this disease and what it does to my body,and what it will continue to do its who I am. And I'm glad I have a husband who accepts me for me and I absolutely love being a mommy

Wow! Youve had to learn to be so brave at such a young age! I did look up your disorder afrer you introduced yourself. Im sad to say id never heard of it before. Most people havnt heard of my disorder either. I understand being pregnant and on crutches! And with this one i cant walk at all! My disorder hs completely contorted both my legs so that i can not stablize or suppirt my own weight. If i were to try to do so, id be standing on my anckles because my feet have turned completely onto their outler sides and in twards eachother ninety degreese each. I am unable to unbend my knees all tge way eitger. Sometimes in my house i feel like my wheelchair only slows me down and keeps me from being able to do things so i get down on the floor and kindof crawl dragging my lower half through my house. Ill be 20 wks tomorrow. Sometimes i think im crazy but i have to do what needs doin.
It doesnt just effect my legs either. Sometimes it takes hold of my arms and hands making my arms jerk uncontrolably and wildly in random directions and my hands curel and claw sometimes so tight i cant even hold my silverware when i eat. My head constantly shakes back and forth like im telling someone no. It makes it hard to read or write or type and i have to use voice recog to speak into to send messages. You can usually tell when i use it because i make lots of spelling errors when i dont  .
I also hate what happens to me but mostly because its so unpredictable and noone can ever say how bad its going to get. Only that Yes, it is going to get worse, it is going to spread, and that there is litterally nothing i can do to stop it. It makes me, a controle freek, feel very out of controle and i have battled servere depression and panick attacks because of it.
I sometimes end up yelling alot because of the constant pain. I feel crazy in the head and people sometimes take me as a very unhappy woman. But i love my kids with my whole heart and body, even if i am falling apart. I thank god every single day for my wonderful husband and sons. I do wish i didnt yell so much and could prove it to them. Sometimes i feel like i really need to.
I loved hearing your story! You are very inspirational to me  . Bless you and your family. And take care, always

<blockquote><b>Quoting Jacquelynn Blaisse:</b>" Wow! Youve had to learn to be so brave at such a young age! I did look up your disorder afrer you introduced ... [snip!] ... need to. I loved hearing your story! You are very inspirational to me  . Bless you and your family. And take care, always"</blockquote>




Oh wow.that sounds pretty bad.
I'm sorry you have to go through this,I know what you mean about crawling around though. I can get around faster that way too lol
Do any of your children have it?

In some cases Dystonia can be passed on by a mutated gene. But as farbas we know i do not carry the mutation so we believe the children are safe. The trick with that is now it is anyones guess how or why i developed it. Some people express it as a secondary symptom to a more dominant desease or disorder. Others get it after recieving massive head trama. But now and then you get people like me who have no known cause. I am still so greatfull to think my babies would be spared. Not so sure i would have tried so hard to have kids if i had known before hand that i had it or that it would progress so agressivly or that it could have been passed on.
Its funny. It does sound pretty bad doesnt it? But it being my norm i dont even think about it in that dinamic. Its become such a normal part of life we just take it day by day like everything else  . It only really bothers me that i have it when i go out in public and notice when others look at me differently. The worst ones are the sympathetic glances or people who stop to talk but cant seem to look me in the eye. Otherwise while its a little more challenging at times i try to get by like if i never had it at all.

Hi there, this is an interesting thread.
At the moment I am not diagnosed and I am not pregnant but I do have a 7 week old DD and am undergoing investigation for MS.
My mother, father and brother all have MS so I am keeping every finger and toe crossed that I do not have it but I guess it is kind of doubtful.
I have had symptoms like numbness and fatigue etc but through out pregnancy everything was fine and now after pregnancy I have vertical double vision and numbness/tingling   I hate it but I get on with life as much as I can and TRY not to obsess over it... I should be getting an MRI scan this month and have to see an ophthalmologist for my eyesight so not a fun month ahead for me.
I would love to have an other baby but I'm terrified of this ever getting worse.

<blockquote><b>Quoting baking my bun:</b>" Hi there, this is an interesting thread. At the moment I am not diagnosed and I am not pregnant but ... [snip!] ... my eyesight so not a fun month ahead for me. I would love to have an other baby but I'm terrified of this ever getting worse."</blockquote>




Welcome! So glad you joined us! My father in law has ms and my husband has thought of getting tested  . It is innerving suspecting but not knowing. I wish you the best of luck and hope you can feel at home here. Blessings and i hopevyou keep us posted and have a good evening

<blockquote><b>Quoting Jacquelynn Blaisse:</b>" In some cases Dystonia can be passed on by a mutated gene. But as farbas we know i do not carry the mutation ... [snip!] ... to look me in the eye. Otherwise while its a little more challenging at times i try to get by like if i never had it at all."</blockquote>




That's great
My LO doesn't have nf which is so amazing
Mine is genetic,but can also be caused by a mutated gene,which is what happened to me. I also have another genetic disorder that no one in my family has
That's 2 unrelated genetic disorders caused by genetic mutated genes.
Some luck huh lol

A lot of people say I'm irresponsible and a bad mom for having children.which to me is rediculous,just because I'm unlucky and have medical problems doesn't mean I shouldn't be able to be a mother and have the joy of bringing life into the world

<blockquote><b>Quoting *PeanutButter*:</b>" <blockquote><b>Quoting Jacquelynn Blaisse:</b>" In some cases Dystonia can be passed ... [snip!] ... and have medical problems doesn't mean I shouldn't be able to be a mother and have the joy of bringing life into the world"</blockquote>




I totally agree. Ive had alot of ridicule for being pregnant so many times and having children when i have such an under studied disorder. I think peopke seem to always have time to judge and look down on others. I always wonder who made them more high and mighty then everyone else. I only wonder if i had known in advance wether i would have tried so hard because i think i would have tried all the precotions i now know i need niw. I probably wouldnt have had so many miscarriages or lost our first son. I also probably would have a very different family and story to tell.
But to say you should not have a chance to have something so amazing as a child of your own just because your sick is wrong and controling. Noone has the right to tell others how to live their lives especially when they have littlr to no experience or understanding of your disorder or even you yourself.