Early onset parkinson's


#1
Hi.

I've scoured medical, patient, charity, scientific and academic web sites, books, documents, leaflets and posters. I've also asked numerous fellow patients what they've been told by their consultants, GPs and nurses. I discover that although each individual source insists that its own definition is correct, there doesn't seem to be any formal, official definition of what age range is covered by the term "Early Onset". Even doctors disagree amongst themselves.

I've found the top-end of this range to be variously quoted as 40, 45, 50 and 60, all from respected organisations, but no ultimate definitive answer from some overriding official body.

More importantly, perhaps, does it matter?

#2
this is, I think, an example of what is called a 'fuzzy border' - if you are 70 on one side, if you are 40 you are on the other side, but there is no point where you suddenly go from one to another.
my personal opinion is that the two types of pd are significantly different and that it is possible for a person with late onset pd to be younger than some people with early onset, in other words its not the age alone that counts but other attributes as well.
early onset - less tremors, slower progression, less dementia, more OCD
though none of these are necessary for inclusion or sufficient on their own.
the pattern of lewy bodies and alphnuclein build up also seems to be different.

#3
Yes 'fuzzy borderlands' this is usually the case in real life isnt it? we just make borders and classify things conceptually in order to help ourselves understand things. In James Parkinson's original essay 'the shaking palsy' I dont believe he classified any symptoms other than physical ones. I think he said all other faculties remain completely in tact. So what does that say about things like OCD, gambling, hallucinating? Was James not able to observe these? have we broadened the classifications? is it indeed the drugs? or did we all have less stressful lives, in his essays , his case studies always seemed to have a patient and a patient's assistant , sounded a bit like one to one carers. Is early onset in fact a different disease which will in future be separated off? Do these classifications matter? In homeopathy disease is treated by individual symptoms and disposition not by naming and diagnosing and treating symptoms rather than individuals as in allopathy. Just food for thought there sunray

#4
Don't think it matters! I still have PD.

#5
Hi everyone
Newly dx with pd.the fist thing I thought is how long have I had it,to how bad I'm going to get.so I looked for the symptoms and try to remember how long in the past I was effected which could be thirty year ago.which scared me.ive been diagnosed with stage 2 .so my head is all over the place at the moment.swollen glands,cooking,dragging foot have all happened last year.im just hoping it all levels out soon.does this ring true with anyone.

#6
hi twins when i first noticed was when i woke up my thumb on my left hand ust to make its way into my palm then a tremor a while after shakin got so bad couldnt even hold a glass right hand started tremor slite then head but now carnt realy do much with right hand but left hand not as bad crazy but true theres so much to say were do i stop were all differant

#7
Hi radio. I finished work cause of the probs with r/h hand 3 year ago.im r/handed so it's a pain.like you say it started with the thumb.ive got all the symptoms and some of the rare ones.but things are getting alot worse and it all seems to be going over to the left side.i think the constant cramp pain everywhere is the worst.but this pd doesn't let you go to bed early either.i had the central pain when I was in my 20s had tests but nothing found,makes you wonder when it all started and why never smoked and not even a big drinker.

#8
Radio I think it supposed to say dadio I'll have to type using my left hand.lol

#9
its radio lol u ok

#10
Hi dadio I'm ok .i think it will take a while for everything to sink in.theres more to pd than I thought.just taking one day at a time.r u ok.all the best twins99

#11
The relevance of what meaning we derive from terms like early onset, in my view, is that as an early onset victim you face many many more years developing and progressively through the degenerative symptoms of the illness. Clearly then a younger person also have a greater risk of Alzheimer's. Early onset is usually classified as anything below 60 years.

#12
Hello everyone

Thanks for the interesting thread - it's a tricky area with no overall scientific consensus. A 1987 paper from Quinn et al - http://www.ncbi.nlm.nih.gov/pubmed/3504266 - proposed that:

Juvenile onset Parkinson's when symptoms begin before 21

Young onset Parkinson's when symptoms begin between the ages of 21-40

We have funded research to investigate the differences between 'early-onset' and later onset Parkinson's, but it's impossible to pinpoint a cut-off point.

Because Parkinson's is such an individual condition it's very difficult to fit people into boxes - whether by age or symptoms - as there will always be exceptions.

#13
I'm sure I'm being dim.

why does it matter what the cut-off date for early onset Parkinson's is?

Caroline

#14
I hate been put in a box!

If this is so i got dx at 49 so that makes me "later on set"!!

I felt a lot better been called "early onset"!

Either way its still parkinsons and you`ve gotta make the best of it and get on with living!

C x

#15
Big c you got dx at 49 but how far back can u go when you first had symptoms.i was dx at 52 but I was shuffling my feet for 15 years before and cramps in limbs for 20"

#16
I think this is a really important point as to how long Parkinsons can take to develop. MY friends grandma was diagnosed in her 70s but they believe that she had symptoms for 30 years leading up to that.

#17
Hi Twins99
Thinking about what you said i probably had symptoms for at least 4 years prior to dx. GP`s don`t seem to know very much about pd so that's maybe the reason for misdiagnosis. I was sent for numerous tests but all came back negative and ended up feeling a bit of a hypochondriac! Don`t get me wrong my gp was really nice to me but sometime i got the feeling she thought i was exaggerating my symptoms. She even questioned the dat scan results!

Big C
:rolling_eyes: