Jump to content

PAF: newly diagnosed


mbevans
 Share

Recommended Posts

My father, age 78, was recently diagnosed with pure autonomic failure (plus no sympatheic nerves in the heart). His orthostatic BP is severe with drops into the 70-80's when standing (and dizziness). he has been worked up at the NIH and confident with the diagnosis, but needs guidance on how to live with this disorder and a doctor to manage his everyday needs. He is otherwise healthy and is getting very frustrated. He lives in Maryland and I wondered if 1. anyone knew any physicans in this area that might take on a new patient and 2. what type of physician do most people get managed by (cardiologist, neurologist, etc...) and 3. Are there any phone type support persons (he doesn't use the computer)?

I appreciate any guidance possible.

Mags

Link to comment
Share on other sites

Hello, and welcome to the board.

If you haven't checked out the section of DINET called "What helps", I'd suggest that you start there.

http://www.dinet.org/what_helps.htm

Also, the NDRF has a downloadable book, in PDF format, that discusses everyday-coping.

http://www.ndrf.org/NDRFHandbook.htm

As for phone support, Michelle and I have been trying to work something like that out, but for now I'd refer to you the NDRF, where they do have staff to answer the phones. Also, there are some support groups around the US where you may be able to hook up with other folks who have a similar diagnosis.

http://www.ndrf.org/groups.asp

Nina

Link to comment
Share on other sites

Mags,

I think Nina gave you some great links, the NDRF has some very informative resources, and friendly folks to talk to on the phone who can help you and your father better understand his condition. I hope that you can get in touch with someone, and definitely read the handbook, it is very helpful. Suport groups are an excellent idea too, because it's always nice to hook up with others who understand. Good luck to you and your dad :(

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...