posted on October 17, 2005 08:16:20 AM new
THIS IS FROM ANOTHER BOARD-Following my mother Mary's release from PSP I went to see her General Practicioner to get the form that would get me the death certificate.
She had only met mother once or twice as her last GP had moved mother from his surgery to this one, never the less knowing that I like to kick up a fuss she ask me what I wanted on the death certificate.
I was a little taken aback, I asked what mother died from she replied 'she stopped breathing'. "Then I am in no doubt" I answered "that I want PSP on the death certificate". She had no problem with this even though she said she didn't know anything about PSP and happily wrote it down (after I had spelt it for her)
When I took the form to the registrar she questioned PSP I gave her an explaination but she said because she had not heard of it she would have to contact the coroner. She did this and the coroner said he had never hear of PSP and would have to contact the pathologist.
The pathologist said that he had heard of PSP but that no-one ever died of it and that the GP should be questioned further.
The coroner spoke to the GP who said if the coroner wanted to know anything about PSP then he would need to contact the only expert she knew of, when the coroner asked who that was the GP replied 'Mary's daughter'
I only hope that mother was looking down and seeing all this, a bunch of professionals floundering around trying to make sense of something that they will never understand until they have stood in our shoes.
I got the death certificate and the only cause of death stated is 'Progressive Supranuclear Palsy' all because they could not write 'Stopped breathing'
My mother will be laughing and regailing the story to all our loved one sharing her peace.
keep posting, stay positive
Georgie
(appartently an expert in PSP)
--------------------------------------------------------------------------------
Georgie dau 2 mother Mary aged 68 - lived in hell, while waiting for heaven- now at peace 20th Sept 2005
posted on October 19, 2005 10:14:13 PM newShe had only met mother once or twice as her last GP had moved mother from his surgery to this one, never the less knowing that I like to kick up a fuss she ask me what I wanted on the death certificate...
This is like an odd knock-off of an old readers digest joke with what reads like a lot of interjection and exaggeration on the narrators part. How could the gp know they liked to kick up a fuss if they had only met the mother once or twice? Do we assume the GP didnt know the mother, but knew the child rather well?
posted on October 20, 2005 06:24:39 PM new
dbug,
what do you need to know about asian art??
better ask me before I develop some uncurable neural degenerative disease.
posted on October 20, 2005 07:33:58 PM new
lol..hi hwaha..are you trying to outdo me in stupid user names?
I'd need to show you the picture, I think. Its these dancers/goddesses in feathered headdress...just kind of caught my eye.(I am not usually into Asian stuff, but I liked this.) Anyway, somebody told me it is thai or siam type artistry with gold leaf stone trimming or something like that. But that it couldnt be real gold leaf because they are not allowed to make it like that anymore. But my question is how do you know whether its authentic or not just from a picture? I would not say this is an ancient artifact, but its definitely well made, and it doesnt look all that new'ish to me.
.
[ edited by dblfugger9 on Oct 20, 2005 07:35 PM ]
posted on October 20, 2005 07:43:28 PM new
??? I know I've been gone for a few months, but what is going on here??
This is too strange and hardly a laughing matter. I know first hand how few doctors are familiar with degenerative brain diseases and movement disorders. *** Stand back, I'm getting out my soap box!***
I have been taking care of my Dad in KY for the last 3 months.
At first, a local doctor who is a specialist in Alzheimer's diagnosed him with one of those " uncurable neural degenerative diseases" called CBGD.
It took a trip to another specialist at U of L to give us a more definite diagnosis of FTD. It IS a nasty ugly disease that will slowly kill my Father. Already the man I know and love is not the person he was 10 years ago.
It is not painful enough to slowly watch someone you love de-evolve into a blithering mass of physical pain, but you also have to constantly fight doctors, friends and family who think that because they have never heard of the disease that it exists only in the mind of the person who has it.
Thankfully there are some good support boards for these diseases where other caregivers can compare notes and experiences. It is about the only thing that is keeping me sane through all of this. His local doctors are not familiar with FTD, so I have to drive him 3 hours to Louisville to make sure he gets the treatment he needs and deserves.
No one in the family has ever heard of it, so they just continue to believe that he has turned into a mean old man by choice and that I am just catering to his/my insanity by agreeing with the specialist that Dad has some strange unheard of brain disease. Even one of my best friends parting words was something to that effect. What a shame people do not realize how painfull their comments are.
As for the OP, I'm not a bit surprised at the GP's question of what should be written on the DC. No one really "dies" of PSP, CBGD or FTD or for that matter cancer, old age or stupidity.
People die of complications from dealing with a disease. As OP stated, "She died when she stopped breathing". Well duh! We all will die that way, but writing that on the death certificate will not help doctors in the future do research into what causes the initial complaint. It is a good thing that the daughter insisted upon PSP being written on the DC. If more doctors recognized the importance of that statement on that piece of paper, we might find that there really are more cases of this illness than originally thought.
Today CBGD, FTD and PSP are considered rare only because no one defined what the illnesses really were until about 20 years ago. As they define the parameters of these illnesses, we are learning about more and more individuals are who are suffering from real organic diseases and not just some psychotic symptom. Hopefully, as more people learn about these disease, we will be able to get better care for them in the future.
posted on October 20, 2005 07:50:57 PM new
thanks pi, I think...er...maybe not, but maybe so...
Well at least I am not one of these people that call myself sexykitten, or machojoe or something shiney and delicate like mingotree or some sh**...and you just know that image is so far off base!
Ltray, I think hiwatha was just kidding. (Sick sense of humor over here.) but I can understand youre sensitive to it with your fathers illiness. It is never easy to be a caregiver for someone who is ill, no matter what the disease. I will say sorry for them girding your nerve on the subject, but still dont believe the original op. Medical professionals are supposed to be required to keep up on new developments to keep their licenses. Not that they know everything, but its hard to believe the OP was true, especially, as I pointed out the narrator seemed to be embellishing right from the start.
.
[ edited by dblfugger9 on Oct 20, 2005 07:57 PM ]
posted on October 20, 2005 08:04:45 PM new
Yes i know but you'd better watch out how you use it's name. It's like casting a spell or conjuring up something evil and then it never goes away.
posted on October 20, 2005 08:08:19 PM new
LOL!! what..wha-ha-tha or dblfugger? Or mingotree for that matter?
Thats like the three demons in my picture, PI!!
No kidding~ancient thai mythology! One is named magrat garlik, the other is nanny ogg..crone..forget the other... nanny weatherwax, I think.
posted on October 20, 2005 08:18:18 PM newYes i know but you'd better watch out how you use it's name It's like casting a spell or conjuring up something evil and then it never goes away.
posted on October 20, 2005 08:29:54 PM new
DF, I'm not Po'd. Just trying to educate the masses and it is hard to get out of that mode.
Just for the record, my Dad lives in a small town. His specialist is 3 hours away. If he dies at home, I'm sure the local coroner will say it was heart failure, pneumonia or aspiration because those are the most likely complications of FTD, but it will be very important to future research to have FTD listed on the DC.
My mom died 20 years ago from a massive internal hemmorage at the age of 48. The hemmorage was due to uterine cancer that had spread to her other organs. The coroner could have listed cause of death as excessive bleeding, but correct dx is important to future research.
20 years ago, a woman diagnosed with Mom's illness had a 60% chance of dying from the cancer. Today that risk has been lowered to 30%. Hopefully, as people become better educated about movement disorders, doctors can treate them with newly developed drugs before ther body is beyond healing.
PS. Good luck with your "demons" [grin], MM is not really THAT bad is she??.
posted on October 20, 2005 08:44:38 PM new
No LtRay.. don't listen to that old kitchen witch...when I am good I am very, very good, but when I am bad... I'm so much better! Life is Sexually Transmitted!
posted on October 20, 2005 10:30:45 PM new You just cant hang
What are you, the homey from pittsburg?
beeapa, since you are incapable of constructing an intelligent post,that is the biggest laugh, right there.
Ltray, that is a good point about the DC...hadnt thought about that.
MM is like my freeking shadow on these boards...everywhere I go she is sure to follow...wants my attention so bad. Even when I am discussing something with someone else and its totally irrelevent to her. She needs to catch another wave once in awhile
posted on October 21, 2005 07:02:02 AM new[email protected] baby everyone just follows you around..because you are so facinating..hahahaha
NOT...dahling...it's because you are so easy..it's like let's poke Fugger with a stick and watch her spaz....hee hee.. works every time too! I know, I know, it's not nice to pick on the mentally challenged, but hey, when did I ever say I was Nice..LOL
Okay, here's where the Fugger comes back and accuses me of using her words...did you know she thinks that once she's used a word in the English language it belongs to her... hahaha
NUTBAR.... Life is Sexually Transmitted!
posted on October 21, 2005 08:34:32 AM new
hwah: Its not a figurine. Its a framed painting. But I think it's just painted in gold on a black background. I just wanted to know what the gold leaf stone trimming was about and why they are not permitted to use it anymore; when that came about - and how would one distinguish that in any such art? It interested me for all of about a moment.lol!
oh dear, look at maggies little demon jumping up and down for the doubler! Anticipating my every word and response even! LOL!!! I told you so many times by the time you even try to catch up to me, I am long gone. Sorry, the best you can do is follow behind with all your collected garbage in tow.
