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Hydrocephalus Support Group Hydrocephalus
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A community of patients, family members and friends dedicated to dealing with Hydrocephalus, together.
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04/26/2008 23:14
tani571
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 I wanted to introduce myself. My name is Julie i live in Indiana, i am 38 years old and was diagnosed with hydrocephalus at birth. Within the last 4 years i have started to suffer from other symptoms i believe may be called shyma which i read about in a packet i got from the hydrocephalus association. I have always worked but i have found increasing difficulty and struggling with constant headaches, balance issues, the ability to understand without writing things down and emotional issues. I would like to know if people with hydrocephalus are able to qualify for disability? I have went down to working only part time and now I am not sure how I am going to pay my bills.
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05/08/2008 21:32
Jbolling123
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 HI Julie, my name is James. I've lived with hydrocephalus since i was about 5 (1970) I'm going through the same changes that you are and feel for you. As for what I've been able to find about social security it appears we are the lost class. Wanting to work losing the ability to and afraid of losing all that we have tried to build.

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05/08/2008 21:37
tani571
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 Yes i have pretty much been told because I have always been able to work i should be able to continue to work now. It's unfortunate most do not understand

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05/08/2008 22:06
Jbolling123
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 thats the understatement My job now is hinging by a thread and i feel like im spirilng out of control

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05/08/2008 22:07
Jbolling123
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 does this site have chat rooms i found it by accident lol

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05/08/2008 22:10
tani571
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 Not sure about a chat room, this site was given to me by a friend who was trying to help find information about hydrocephalus for me.
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08/10/2008 21:50
historyman78
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 I was diagnosed when I was 23 and am now 30. I have applied for dissability twice and was turned down both times. The first time I was told that since I was not legally blind that I should have no problems working. The second time the psychologist who tested me saw my college transcripts and said well if I can obtain a bachelors degree and be working on a graduate degree that I should have no problems working. I have constant headaches and dizziness. I have also had substantial frontal lobe damage because of subdural hematomas brought on my shunt overdrainage. I appear normal and I cover up the fact of my symptoms but I do have problems and the system simply does not seem concerned. I think those with hydro have a hindrance in a way because most appear normal and healthy yet in reality they are not. It is hard to get the outside world to see things clearly. I have been told by my neurosurgeon and a number of physicians that I should qualify for partial dissability but I have yet to have success at obtaining that. From the two times I have tried I get looked at as if I am trying to work the system, which is not the case.

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08/10/2008 22:22
tani571
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 Hi and welcome to the group! I also am in the process of filing for disability and have already been told that because I appear normal that I will probably be denied. I have not been able to work, and the system is dragging it's feet in even approving me for medicaid so that I can go to the doctor to get treatment. I suffer from constant headaches, balance issues and lacking the ability to fully understand at times what is going on around me. This is definately our support group for one another because we are the only ones who understand what we go through on an every day basis.

Nice to meet you, Julie
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08/10/2008 22:32
historyman78
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 I wish you luck with obtaining the medical support you need! The system does seem good at trying to avoid facing this condition. Do you know of any medicines that help relieve the headaches and vertigo? I am to the point where I can hardly stand to drive or ride in a car because I get motion sickness with the elevation changes.
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08/10/2008 22:36
tani571
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 Sorry wish that I did. I was researching the net and come across one medication for hydro patients it was an herbal pill but not sure what the name of it is off hand. I would like to look into it further. I'm off to bed as it is very late or early whichever way you want to look at it, so I will let you know if I find out the name. Have a great night and like myself I will tell you also remaim positive and stay strong.
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