Hope all is well for you. My brother appears to be suffering from Korsakoff. He hasn't officially been diagnosed yet (they did diag. Wernecke). None of the doctors seem to be too quick to make the diagnosis. However, my brother has all of the characteristics. It's been three months now, and based on the reading and research I've done, he's got it.
Based on everything I've researched thus far, there doesn't appear to be much available
in the US with regard to truly understanding and treating this condition...or supporting family members of those suffering with the condition. To put it bluntly...the state of the medical field's knowledge and targeting of this condition is absolutely pathetic! When you google Korsakoff, you will find that there seems to be quite a bit of support (comparably) in other countries like the UK and Australia. I've even found long-term care homes specifically targeted for Korsakoff patients! In addition, there are many professional articles addressing various aspects of Korsakoff (primarily medical - technical) written by doctors from those countries as well.
I have to say that I'm still researching for information beyond the one or two page definitions and explanations you find on most medical based web sites. I will be glad to forward any info I receive that may be of help to you. You and I seem to be in a similar situation.
My brother is 40. None of the doctors seem to have a clue as to what to do for him at this point. Sadly, my mother and I have more knowledge about the condition that most of them do. Perhaps a medical doctor who does have serious knowledge and information about Korsakoff will read this and share their expertise.
I've been thinking about trying to start a support group simply to have a collection of people together who understand and can share their support, knowledge, and information. I'm based in NYC. If there's anyone else out there who would be interested, please let me know. Maybe something already exists. That would be great...please advise.
Please feel free to keep in touch. I wish you the best.
Best regards- Bryan
--- In wernicke_korsakoff_syndrome@yahoogroups.com, "elliot_smls" <esamuels2@...>
wrote: > > hi...I juat found this group and I am really interested in finding out > more...my wife was diagnosed with this in February of this year, and I > [m still trying to deal with it. I'm in my mid forties, and live in > Fl....Can anyone get me started? Thanks >
my estranged husband was diagnosed in Nov. 2002 with Wernicki. I had noticed for three days earlier that he was hallucinating and finally took him to the...
Good to read your story Loretta. From the couple dozen who are posting here, it seems obvious that this disease manifests itself in both subtle and major ...
Larry, My Nuerologist told me that I have Restless Legs Syndrom (ah yes, yet another syndrom). It always happens to me when I am laying down trying to relax,...
mamachuck61@...
Mar 18, 2003 6:48 pm
Loretta, Faith is something that you have to have but it is not the only thing that you have anymore because you now have the rest of us too. We are here for ...
mamachuck61@...
Mar 18, 2003 6:53 pm
Hi guys...I was having trouble with this and now eat a banana a day for increased potassium. It doesn't bother me anymore. Nora ... From: mamachuck61@... ...
I don't know where to begin...my long term love has WKS and will be coming to live with me soon. He is mobile with a cane but has memory and function loss that...
... Cynthia Hi Cynthia! Welcome! Thats a new one to me nausea... but for myself, and my daughter who is pregnant, for nausea we mix together powders of:...
Cynthia, I was constantly nauseaus and had dry heaves ALL the time. This did not stop until I was given the IV thiamine treatments. They started them one...
mamachuck61@...
Jan 14, 2004 8:12 pm
hi my name is billy i live in the richmond va area and i think i have wks am 55 years old doctor said i suffer from vascular dementia but my wife seems to...
Billy and wife, I too live in the Richmond, VA area. I see Dr. Vincent Calabrese in Nuerology Dept. at MCV. He diagnosed me and has been treating me for...
mamachuck61@...
Feb 27, 2004 10:15 pm
Dear Billy and wife: My mom was diagnosed with WKS last year during her hospitalization. She was tested in July by a neouropsychologist who said the test...
hi...I juat found this group and I am really interested in finding out more...my wife was diagnosed with this in February of this year, and I [m still trying...
Hi Elliot...welcome to the group. My name is Nora and I'm one of only a few members who suffer from Wernicke's Encephalopathy. Most of the group members are...
... look forward to reading through the archives, and hearing from anyone in the community, so I can learn to live and grow through our common experience. ......
Hi Elliott SOrry to hear about your wife and I wish you all the best There is certainly lots of history to look at on this site! My partner also suffers from...
Wow Kathy! That was like reading my story of my Mom Verbaetum! My Mom was diagnosed August 2005 at age 61. She was in an induced coma in the hospital to try...
Hi Jackie: Sorry to hear about your Mom. Our mother's journies do sound similar. Her nursing home was also in CT. (Middletown) Once my mother got to the...
Trevor & All, Welcome to the group Elliot. I had to smile at Trevor's talk of how W/K folks don't hold a grudge. And I really had to smile when he talked about...
Hi Marg and Allen: I loved reading about your life together and he is lucky to have you to help him. My mother is also an example that not all sufferers...
Elliot- Hope all is well for you. My brother appears to be suffering from Korsakoff. He hasn't officially been diagnosed yet (they did diag. Wernecke). None of...
Bryan --- I was interested in hearing more about your brother's case. I am in a similar situation and I was wondering how your brother was dealing with the...
Bryan, My name is Carrie and I'm in Cali. My dad is into his 3rd year of this disease. He was recently admitted to the hospital and then a nusring home for the...
Hi Elliot, I'm so sorry about your wife being diagnosed so young! I'm new here too. My mom was diagnosed in August of last year and I'm still trying to figure...