posted
My mother first started showing symtoms of some kind of movement disorder in 2003 at 62. She'd been hospitalized for pnuenomia and almost didn't make it. But my mother has always been strong willed and she pulled through! She recovered but something wasn't right. We thought that maybe brain injury had occured due to a lack of oxygen or a stroke. We needed answers.
The very first neurologist I took her to told us it was "age related". He did order an MRI but there was no evidence of brain damage, stroke or TIA. He stuck by the age related diagnosis (if you can call it a dx). But we knew there was something more, my mother had been healthy before the pneumonia.
The next doctor I took her to ordered more tests, psych exams, MRI, bloodwork, etc. When all the reports came in, he diagnosed her with CBD and referred her to a movement disorder and Parkinson clinic. The doctor there called it Parkisonism.
4 years later after 3 neurologists, countless appointments, physical therapy, and several different medications we are back to the dx of CBD.
I've started researching it and found this site and I'm very grateful to have found it, especially this message board.
Now that we are at least 4 years into the disease, my family and I are scared. Everything I've read so far is that disease runs a course of 6-8 years and death occurs due to complications of this illness.
There's so much information out there about nutrition, therapy, etc. I feel like I don't know where to begin.
So I'm starting here.
We live in the Baltimore-Washington Metro area.
Is there any help locally for people stricken with this horrible disease??
I apologize for the long post but I kinda feel relieved getting some of this out.
Thank you,
Renee Jefferson Columbia, MD
Posts: 1 | From: Columbia, MD | Registered: Oct 2009
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posted
There are other message boards to join. Some cover a number of conditions related to CBD, such as PSP and FTD. You never know where a good idea you can use will pop up.
Try the Yahoo Groups "tauopathies", "PSPinformation" and "CBGDsupport". Also, there is a message board on the ftdsupportforum.com
Do NOT depend on just one place for your information, especially message boards. These tend to develop a personality of their own, and sometimes this personality squashes the free flow of information.
Posts: 27 | Registered: Jul 2008
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