New here with deep family parkinsons history


#1

Hi all,

I am knocking on the door to 35 in a couple of weeks and am looking for reassurance/advice etc.

My grandad as long as I could remember him had parkinsons and died aged around 62 from Pneumonia.

Roll on a few years and my dad was diagnosed aged around 37 with parkinsons. He got called for London for testing where it was found that the parkinsons runs in our family. I may or may not develop it. I was told I could have testing in London to see what my chances were and 10 years ago I didn't want to know - too young - wasn't even used to my dad having it let alone the horrid thought I might 

Now I am only a couple of years off of this (my grandad was also diagnosed young) I am getting scared and also tbh I want to know. If I am going to get it it will happen and I guess I want to be able prepare myself.

Does it sound stupid to do the testing now? Should I just leave it? From what limited research I have done it would appear pesticides might be a part of it (some years ago I looked) and both my dad and grand dad have used this as gardeners and on farm workers. Where as besides Glyphosphate in the garden spray I haven't been around anything hard core.

Not quite sure what I am looking for really but just want to sound off here. I would like to look into genetic and young persons parkinsons more if someone could guide me to that research too.

Thanks in advance all!


#2

Hello there 

it's just my opinion but it's all up to you but if you feel fine and you will know your own body as how you are but I would glory on and be happy , as so far there is no cure for Parkinson's . But if you must know then get tested  , it's easy for me to say but you must think about it a lot , so if it will give you peace of mind get tested , good luck and I hope you don't join us 

Ian 


#3

Hi rebekah

Do what you feel your heart is telling you. Some might prefer not to know, others would. We are all individuals. Can you cope,with each day not knowing?  I have a family history too of family with Parkinsons. My eldest daughter wanted to know so they did a blood test to see if I was a carrier of the gene. Do what's right for you. All the best. X


#4

my grandma had parkinons late in her life and this year my dad has been diagnosed with it too. Husband got it and I am thinking the possiblities are high for either my brother or myself getting it later. Only you know what to do.


#5

Get tested, waiting till you have symptoms means that 75% of the affected neurones are already gone. Knowing sooner might mean that now or in the near future you could try interventions that prevent or delay onset. Mind you, I think the tests only tell you if you carry genes that make you more likely to develop PD, I don't think there is yet reliable tests for early, sub clinical disease itself. And fingers crossed, maybe you haven't inherited the bad genes!

You're fortunate to be pre-warned. If only I had known I was to get PD, I might have done more to avoid it, as far as that is possible.


#6

Sorry to ask, are you still living in Jakarta?

I am living with my wife approximately 20 kms from Cianjur. I am an English guy who would like to find a Neurologist within travelling distance of my home. The Neurologist in Cianjur is having a hard time diagnosing my condition. I was diagnosed with PD in Newcastle by Professor David Bates in 2006 however, since that time I have been diagnosed as NOT having the condition by Professor Earle Lim in Singapore in 2014.

I read your post regarding living with an empty stomach to feel the benefit of the medication.

I will understand f you do not wish to be disturbed.

Thank you,

Paul 

[edited to remove personal details]