Wednesday, 12 March 2008


I made an off hand comment to a group of other volunteers in the bureau this morning.  It bombed.  The conversation started after someone said they hadn't mentioned a specific thing to their doctor but assumed they would have picked up on it.  I can't remember the exact comment but it was along the lines that doctors aren't the be all and end all of everything medical and that their knowledge can be lacking. I am feeling particularly anti the medical establishment at the moment and may have used the term "useless" in there somewhere.   Everyone else disagreed with me

CP is something of a case in point when it comes to that statement.  CP is a chronic condition which is defined as "not unchanging" which basically means that it's not degenerative and it won't get worse but that the aging process may affect a CP-er sooner and greater than your average TAB person.  It's incurable although treatments are improving.  CP-ers have a good prognosis as described in this article (which is from wikipedia)

Note the following:

in most cases persons with CP can expect to have a normal life expectancy 

I know three or so people who have CP and a whole host of other medical issues; some of which are pretty serious.  I am not including myself and my depression dx in this example.  None of their issues are related to or influenced by the presence of CP.

One of those people recently had a long hospital stay and spent some time on a ventilator.  When we spoke recently they were extremely upset.


Because after living with CP for 28 or so years, some doctor at the hospital told her that CP gets worse and worse, is degenerative and people die of it.  They told her it was the same as Muscular Dystrophy.   They specifically said that "it's what CP does."
She wanted to know if I ever knew that.

That doctor is very very lucky that I just heard about that in an MSN conversation.  And I really hope I was able to convince her that it wasn't true and the doctor didn't know what they were talking about.

Having an incurable condition is not the end of the world.

Having an incurable condition does not automatically indicate that the person will get worse and deteriorate.

Incurable does not equal terminal.

But I could cheerfully "terminate" the medical staff who were ill informed and  had no people skills and told my friend that.


Cecilia said...

I was browsing and found your site. I enjoy your wit, humor, and the spirit of your writing. I have a sister with a disability (not CP) and I enjoy reading your blogs. What you have to say is very profound and I think people should listen.

Shiloh said...

Gees, some doctors sure make you wonder how they came by their information of bilge and got their degrees, don't they?

yanub said...

I think my opinion regarding doctors is pretty darn clear. Those of us with chronic conditions, by the very fact of our living each day, know more about our limitations and possibilities than any doctor can get from med school. The good doctors understand that, and learn from us. The mediocre ones think that everything they need to know was covered in a med school Power Point presentation.

Disability Blog Carnival #34: Breaking Out « Andrea’s Buzzing About: said...

[...] give the women wheels and they get all uppity-like! And more power to them, I say. Emma the Wheelchair Princess just had to break out of her Good Little Patient role by remarking to other volunteers that doctors [...]


Related Posts with Thumbnails