Previous Thread
Next Thread
Print Thread
Page 2 of 3 1 2 3
Joined: May 2002
Posts: 43
H
Offline
H
LOL!!!!!!!!!!!!!!!

Joined: Sep 2000
Posts: 713
S
Offline
S
Jane: Email me privately. I am not familiar with this particular disease but I do know a bit about medical research and how to get decent care for elderly people.
The first thing you need to understand is that anyone who has been diagnosed with a life threatening illness needs a "designated bitch" to intercede with the for profit health care system. That may turn out to be you.
The second thing you need to do is help your father resolve to take responsibility (with your help and the help of other friends and family members) for his own medical decision making. Doctors should be given no greater deference than any other technical person, they are humans, not gods, and ALWAYS ALWAYS always get a second, third, fourth, fifth, etc. opinion.
The next thing you need to understand is that there is a tremendous amount of information on the internet about all things medical. You need to read everything but be sophisticated about who is publishing the information. Seek out innovation (www.medscape.com; and medline (need to use portals to get to medline, email me privately and I can send you some) but beware of quacks. Do net searches for clinical trials (google is a good place to start). New treatments that work are rarely discovered by the doctor, they are almost always found by the patient or the patient's advocate.
The good news is that your father's disease has a constituency, meaning an organization. I did a quick search for you and found this: http://www.psp.org/
Its a good place to start doing research on treatment alternatives, clinical trials,care issues, and finding support in your community.
Above all else: Resist the urge to infantilize your father because he is sick and elderly. Infantilization of the elderly and disabled is a major cause of suffering and death. Just because someone has a severe physical disability does mean they have lost their intelligence. There are a world of new technologies out there to help the disabled retain much of their independence, including activities of daily living (eating, reading, watching TV, dressing themselves)and in communication.
Finally: Do not EVER allow an HMO or an insurance company to become the arbiter of your father's care.
You will learn to be less polite and more pushy. Pushiness is literally a lifesaver when someone you love is sick. Do not take NO for an answer.
You can email me at: [email protected]


Susan Guberman-Garcia, Attorney at Law. Phone: 510-792-2639
Fax/Voicemail:: 510-405-2016 Email: [email protected]
Joined: Sep 2000
Posts: 713
S
Offline
S
No. As I said, I don't know anything about this disease. Never heard of it before reading Jane's message.
What I do know is how to find INFORMATION about diseases and conditions. There are very few conditions for which there are not a multiplicity of treatment alternatives, some focusing on "cure," some on symptom relief and some on helping you live with a chronic illness and retain as much enjoyment of life as possible while doing so.
We are also living at a time when medical knowledge is increasing exponentially. There are many exciting new theories about all kinds of diseases and many clinical trials of various types going on.
I am also somewhat knowledgeable about the politics of getting decent care for elderly people, and what kinds of guerilla tactics the patient and his loved ones and advocates must often use to accomplish this, and how to minimize one's chances of death by
iatrogenesis.


Susan Guberman-Garcia, Attorney at Law. Phone: 510-792-2639
Fax/Voicemail:: 510-405-2016 Email: [email protected]
Joined: Apr 2000
Posts: 7,059
Offline
Susangg you are a dear angel, with a huge warm heart.


Dare To Deviate
Joined: Jan 2002
Posts: 22
K
Offline
K
Jane, I read Susan's post and she is right. I work in a major medical center and would be happy to do some literature searches for you as I suspect your free time for this type of thing may be limited. I would be happy to assist you in any way I can. You can email me at: [email protected] if you would like some research help. My best to you and your family. Kim Matson

Joined: Oct 2000
Posts: 1,657
Offline
WOW this is all too cool!
Hope
P.S. Welcome back Chloe, I missed ya!

Joined: Feb 2002
Posts: 5,255
OP Offline
thanks, all. esp susan. first, dad isn't elderly, which is the "too bad" part. he is only 64.

second, it is a very rare condition, but it is what dudley moore had.

mom is being really great, and i am so proud of her. she has some very hard days, but gets thru them. although the diagnosis is new to us, the illness is not. we think he's had it 3 or 4 years now, but much worse in the last year. we DID initially do just what she said, infantized him. but now we are trying hard not to. (easier said than done). we focus on quality of life, and as stated, letting him enjoy his grandchildren.

i will look into your suggestions, and thanks for your care & concerns. but again, i was mostly giving our dr friend a chance for redemption.

Joined: May 2002
Posts: 43
H
Offline
H
LOL!!!!!!!!!!!!!!!!

Joined: May 2002
Posts: 43
H
Offline
H
Redemption???? LOLLLLLLLLLLLLLLLLLLLLLLLL!!!!!!!!!!!!!!!!!!

Joined: Feb 2002
Posts: 5,255
OP Offline
ok, maybe bad choice of words. whatever. call it what you want.

Page 2 of 3 1 2 3

Link Copied to Clipboard
March
S M T W T F S
1 2
3 4 5 6 7 8 9
10 11 12 13 14 15 16
17 18 19 20 21 22 23
24 25 26 27 28 29 30
31
Cayo Espanto
Click for Cayo Espanto, and have your own private island
More Links
Click for exciting and adventurous tours of Belize with Katie Valk!
Who's Online Now
0 members (), 260 guests, and 0 robots.
Key: Admin, Global Mod, Mod
Forum Statistics
Forums44
Topics79,199
Posts500,011
Members20,460
Most Online7,413
Nov 7th, 2021



AmbergrisCaye.com CayeCaulker.org HELP! Visitor Center Goods & Services San Pedro Town
BelizeSearch.com Message Board Lodging Diving Fishing Things to Do History
BelizeNews.com Maps Phonebook Belize Business Directory
BelizeCards.com Picture of the Day

The opinions and views expressed on this board are the subjective opinions of Ambergris Caye Message Board members
and not of the Ambergris Caye Message Board its affiliates, or its employees.

Powered by UBB.threads™ PHP Forum Software 7.7.5