Parkinson's Disease Support Group
Parkinson's disease is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement, and in extreme cases, a loss of physical movement. The primary symptoms of Parkinsons are due to excessive muscle contraction, normally caused by the insufficient formation and action of dopamine, which is produced in the dopaminergic neurons of the...
In the Friday edition of our local newspaper was the regular column written by Dr. Donahue. It's that last two sentences that threw me.
Have you been told that after your initial diagnosis that your life expectancy is 10 yrs. on average? Maybe my head has been buried in the sand, but I don't recall ever being told this or reading it anywhere in all the reading & researching I have done on PD.
I am going to give it my best shot to copy the article and place it below:
Dear Drs. Donohue and Roach: My dad, age 77, has just been told he has Parkinsons disease. We, his children, arent sure of the implications of this for him, our mother or us. Currently, he isnt greatly impaired. He moves more slowly, but his thinking is clear. His hands dont shake.
What can we expect? What is his life expectancy? How is this treated? B.B.
A: Parkinsons disease is estimated to affect a million North Americans. Its a difficult illness difficult to have, difficult to treat and difficult to understand. Most of the time, the illness strikes people older than the age of 60, and most cases of Parkinsons disease are not inherited.
The underlying problem is a depletion of dopamine, a brain chemical that is vital to smooth, coordinated muscle movement and to thinking. Four prominent signs distinguish this illness. One is tremor, a shaking of the hands when theyre at rest, as they are when theyre lying in the lap. The index finger and thumb constantly roll over each other. Muscle rigidity is obvious when a doctor tries to move the arms or legs of the patient. They tend to be tightly frozen. Parkinsons patients find it hard to button a shirt or tie shoes. Bradykinesia, slowness of movement, is another sign. Typically, patients walk with slow, shuffling steps. Theyre quite prone to falls. As times passes, many patients develop trouble with clear thinking.
The treatments for Parkinsons disease are many. Often, the first choice is Sinemet, a combination of levodopa and carbidopa. It restores brain dopamine levels. Ill mention some other drugs to give you an idea of available medicines, but I cant elaborate on the way they work space isnt available for that. Amantadine, Artane, Requip and Comtan are but a few of the Parkinsons medicines that can be turned to if Sinemet fails to bring a satisfactory response.
From the time of diagnosis, Parkinsons patients average 10 more years of life. Thats an average, not a figure written in stone.
Have you been told that after your initial diagnosis that your life expectancy is 10 yrs. on average? Maybe my head has been buried in the sand, but I don't recall ever being told this or reading it anywhere in all the reading & researching I have done on PD.
I am going to give it my best shot to copy the article and place it below:
Dear Drs. Donohue and Roach: My dad, age 77, has just been told he has Parkinsons disease. We, his children, arent sure of the implications of this for him, our mother or us. Currently, he isnt greatly impaired. He moves more slowly, but his thinking is clear. His hands dont shake.
What can we expect? What is his life expectancy? How is this treated? B.B.
A: Parkinsons disease is estimated to affect a million North Americans. Its a difficult illness difficult to have, difficult to treat and difficult to understand. Most of the time, the illness strikes people older than the age of 60, and most cases of Parkinsons disease are not inherited.
The underlying problem is a depletion of dopamine, a brain chemical that is vital to smooth, coordinated muscle movement and to thinking. Four prominent signs distinguish this illness. One is tremor, a shaking of the hands when theyre at rest, as they are when theyre lying in the lap. The index finger and thumb constantly roll over each other. Muscle rigidity is obvious when a doctor tries to move the arms or legs of the patient. They tend to be tightly frozen. Parkinsons patients find it hard to button a shirt or tie shoes. Bradykinesia, slowness of movement, is another sign. Typically, patients walk with slow, shuffling steps. Theyre quite prone to falls. As times passes, many patients develop trouble with clear thinking.
The treatments for Parkinsons disease are many. Often, the first choice is Sinemet, a combination of levodopa and carbidopa. It restores brain dopamine levels. Ill mention some other drugs to give you an idea of available medicines, but I cant elaborate on the way they work space isnt available for that. Amantadine, Artane, Requip and Comtan are but a few of the Parkinsons medicines that can be turned to if Sinemet fails to bring a satisfactory response.
From the time of diagnosis, Parkinsons patients average 10 more years of life. Thats an average, not a figure written in stone.
C
I know the cure is coming and we won't even have to deal with this. Please don't let this stress you out. It did me at first but now I remember no one can predict anything definite about symptoms and therapies so how can they predict only ten years left?
particular case was a fast progression or slow. In my husband's case, he was diagnosed at age 59 and is now 64 and the doctor said that his progression is a slow one, so I pray that he has more than 5 years left. However, if he doesn't do more exercising, in various areas, he progression could increase. That is my worry, but I've mentioned that fact before.
I wont repeat what I said when I read your post, but who is this Dr and where does he get that figure from?
I almost choked, (wow not even the allotted 10 years! Lol) I have spilt my tea and it has completely put me off my biscuit. I haven't heard anything like that before - at diagnosis my specialist told me that he would think I would be 'mobile with reasonable quality' in twenty years ........mind you that doesn't sound all too great either.
I am off to put my affairs in order and like Schells there are a few cupboards that need clearing too - it's a good job we can see the funny side!
Julie
Julie - you crack me up! When I read that column (which is syndicated nationwide in the US) I was sitting in my livingroom by myself. I was so darn mad that something like this would be read by so many and they would believe it because the "doctor" said it!
Then - after thinking on it for a few days, I started thinking "what if he is right and I have this all wrong?".
I love the comments about getting busy and living life or getting projects done now. (That was my original thought process when first diagnosed.) Now I'm thinking it wouldn't hurt me (or anyone - for that matter) to focus more on this attitude.
Paula - you are right - it's BUNK! (And, that is just the word I will use if anyone asks me about this article!)
Hey, maybe I can get my kids to finally be nicer to me.
Have to laugh with PD - it's the only way.
I've never heard the 10 year life expectancy before.. I was diagnosed almost 19 yrs ago, so I guess on that theory I'm living on borrowed time... I was 34 when diagnosed and in the main progression is slow..
I think it's wrong for a Doc to say this as it scares the hell out of people, even if is a average figure... PD is a complex & unpredictable illness that effects each one of us differently... I have problems with choking,breathing,balance etc... I reckon the Doc should do a re-fresher course on PD... and maybe join this group as he might learn a few things..lol...
So all I can say is wherever you are on your journey with PD, please try & do all you can that makes your journey run a little smoother, have humour in your life.. do all you're able, live for the right here,right now & never surrender.
And Schells is right, what the Doc said is bunkam!!...
I wish you all well...
Dirky ?;O))x
The authors drew data from six European studies reporting a standardized mortality ratio to calculate age-specific life expectancy and anticipated age at death for PD patients, and compared these with population-wide statistics from the UK. The six studies were published between 1995 and 2004, and included 819 PD patients.
The mean life expectancy (LE) and average age of death (AAD) for PD patients (and the general population), stratified by age of onset, were:
Age at onset LE AAD
25-39 38 (49) 71 (82)
40-64 21 (31) 73 (83)
65+ 5 (9) 88 (91)
For example, the average life expectancy of PD patients diagnosed between ages 25 and 39 was 38 years, with an age at death of 71.
The results from this study are in line with those of earlier studies, including from the United States, indicating a more significant reduction in life expectancy from earlier-onset disease. The authors write, It may be speculated that after a long disease duration, despite slower disease progression in young onset disease, a greater proportion eventually becomes significantly disabled and prone to medical complications.
Estimated life expectancy of Parkinsons disease patients compared with the UK population
L Ishihara, A Cheesbrough, C Brayne, A Schrag
J Neurol Neurosurg Psychiatry 2007;78:1304-1309
Dirky ?;O))~