CP related,  Uncategorized

>Incurable

>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.

Why?

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.

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