'I don't want to be hidden away'

By Jane Elliott
Health reporter, BBC News
http://news.bbc.co.uk/1/hi/health/7425182.stm

Mention the words Parkinson's Disease and most people image an older person.

And, although the majority of people with the progressive neurological condition are 60 and over, young people can and do get it.

Jacqueline Narnor was just 36 when she was diagnosed nine years ago, and doctors suspect that she could have had Parkinson's Disease since she was 18.

Like a number of fellow young-onset patients, Jacqueline, a quilter from Newbury, Berkshire, feels few understand what she is going through.

Vital support

She is stared at when she goes out on her mobility scooter, people avoid looking her in the face when talking to her and seem embarrassed by her condition.

Jacqueline tries to treat it all with humour and is determined to be as in the public eye as possible - to get the dilemma of young-onset Parkinson's patients noticed and talked about.
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That is pretty sad what she has to do to get treated normally. I have a lot of respect for what she's doing especially the way she's making people notice her. You and I have it bad as well being in our mid-40's (I just turned 47 so I'm even older than you :P). We get treated this way because we're young, and it looks as though we're out for a free ride and the "perks" like parking in an HP spot.

Where I work, people think I'm faking it. It's not my co-workers, but the other people in the building where I work. I get glared at every time I park in the HP spot. Little do they know what's going on. One day I took it upon myself to explain to some of them what I had. One of the guys down in shipping said to me "I knew it was something like this because my brother-in law has it".

People should respect others no matter who they are.

It's such a free ride isn't it!

John

i was dx'd with pd at 26, 17 years later, i'm 43
i've seen every reaction possible, ie: verbalized, facial expressions, avoidance, accccck

don't hide because of other peoples inability to cope with the appearance of your disease or illness

you have enough restrictions to deal with, be happy for what you can do
poke your tounge out at folks that stare unkindly; give them a real reason to stare

take care
tammy

How are you?
that is why Txlady and I purposely made the documentary focusing on
Young onset - I may be making a pt 2, but I will be doing it this time with
a well known director/ documentary producer -
love &

It is interesting that she was diagnosed nine years ago at age 36, but doctors think she may have had Parkinson's since she was 18. I think I may have had Parkinson's since 1982 when I was 28. That is when I first stopped feeling young and healthy. My neuro says it is possible, but not likely. I wonder if another doctor would say something different. I first started seeing a neurologist in 1999 and was fianally diagnosed with PD in Jan. 2006.

Hi

I'm Jacqueline Narnor. Thank you for your kind comments!

The reporter did mis-quote me a little bit, I only use a scooter when I really have to.

Yes my neurologist does think I've had it since I was 18 mainly because my father used to say that I had a nervous disposition because of the tremor in my hand back then.

Another indication was after having my children I would shake all over for about 12-18 hours, it used to panic the medical team who thought I was going into shock and about to have a heart attack.

I just wanted to say to you, stay as happy and relaxed as you can, not always easy I know, but that is when your symptoms will be the best they can be.

Jacqueline: