@ldrake101 Boston! I have not been to Boston for nearly 30 years, but we loved it. We stayed a few days, then went on up into Maine and back through New Hampshire and Vermont. To send a private, direct mail, click on the envelop between the search magnifying glass and the bell. Anyway, You must be about the age of our eldest daughter. She works for BLM, and loves Alaska. Another lives in Phoenix, our son lives here, and the third daughter lives in Texas. I just try to keep going. We will be going to Nashville next weekend for a discussion with ALNYLAM about hTTR and other fatal diseases. You take care, and stay in touch. Karl

I am still living with this disease and would be happy to help answer any questions you have. I wasn’t given much time (diagnosed at 30 years old) and can shed some light on my experience and those of my caregivers and treatment facilities.

@menville I am new to this group, and somewhat, newly diagnosed. I have so many questions! I am only 60 yrs old. I am having trouble finding doctors who will take me seriously and/or, know anything about Cerebellum Atrophy! I don’t know how to send a private message yet, but, I actually think all public questions, and answers, anyone can provide, would be helpful to everyone who has a reason to read this thread! I would like to thank you all, for sharing your stories with the world! Up until now, I have been suffering alone, not knowing there were others suffering with Cerebellar Brain Atrophy, without a diagnosed cause!
I thank you ahead of time, for any answers and information you can give me!
(It appears that most of the posts are not current. Is this thread still active, or am I alone again?)

@flo1957 You’re definitely not alone and I was 30 years old when they found mine and deteriorated very quickly. I can tell you how very rare this is, that I have been studied extensively by numerous world-class institutions and I continue to be here to help people like yourself newly diagnosed to help support and provide any wisdom that I may be able to offer. If you can, let me know how your diagnosis came about and what symptoms and questions you are struggling with so that I can directly help explain or give you some information on how to help. If you click on my profile, you’ll see my very first post AND that I am still here, despite being told that I wouldn’t be. I can tell you that having a rare condition is frustrating but fortunately I have fought for a long time to help people like ourselves maneuver through the darkness.

@flo1957, did you see the response that @menville wrote to you here?

I am actually just now seeing the replies! I'm so glad to know this is still active!!