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Re: Cortical Basal Degeneration
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Posted by Marylin
on November 17, 1999 at 14:12:49:
In Reply to: Cortical Basal Degeneration posted by Edith Mountain on November 16, 1999 at 00:09:55:
:My name is Marylin and my mother has been suffering with CBGD for approx. 8 years. She is in what has been described as the final stage of this devastating disease. My heart goes out to you. I've heard of many slight variations to the symptoms but never heard of vision loss as being associated with CBGD. I have signed up to a list over the internet of people who meet to share information and experiences with this disease and it has been extremely helpful. Here's the address: onlist.com(register under cbgd_support).
Also, cbgd is often misdiagnosed from what I've seen on line. You might want to get a second opinion. Not sure where you live, but My mother and many others on onelist were diagnosed at Mayo Clinic in Minneapolis. Let me know what State you live in and I'll see if I can get you additional information on help closer to you.
: My name is Edith and I am 83 years old. I am caring for my daughter who is 53 years old. Mary was diagnosed with CBDG about 5 years ago. She is physically and spacially disoriented. She appears to be going blind and losing the ability to speak and formulate her thoughts which makes her unable to express herself. She is going to Cognitive Therapy which she feels is helping her feel better. This a devastating illness and we are hoping for some kind of cure or experimental drug or something to prolong her life and hopefully to give her some quality of life. I'm exhausted and also caring for my 88 year old husband who has mild demensia. If someone can help provide me with more informAtion on different drugs or any information regarding this illness my friend's email address is firstname.lastname@example.org. Has anyone ever heard of neuro surgery involving healthy brain tissue transplant? Apparently in Europe this has been done with lab animals and I would like more information on it. Thank you. Edith
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