Hello I'm new here,


#1
Hi I just wanted to connect to others in a similar situation as myself as my world has become so small since my diagnosis, plus I'm not really ready for Parkinson's is a bonus or a god given thing. I still feel really angry an wondering why so please no religious comfort as I've seen on other forums which has put me off registering with them!

My intention is not to upset anyone but I'm a firm believer in asking for what you want and what you don't want! They used to be called boundaries, I suppose after this rant all I want is a friend who knows what I'm going through an can offer some support as an when required, i can't do this on my own an I find it so hard to ask for help

Thanks

k x

#2
Hi Downham prisoner.

First of all, a warm welcome to you. I agree with you that pd can make your world smaller, but you must fight the tendency to let pd take over your life. Easier said than done, I know. Just try to do all that you used to do and you will find that as things get harder to do, you will adjust to things. Many of the symptoms you read about will never effect you. OK you can read about someone somewhere having the most horrendous symptoms, but it does not have to be you. When you consider the number of people with pd, it is no wonder that you can read about someone somewhere having different symptoms than you. As the old army saying goes - never let the so in so grind you down.
You mention about wanting friends. Well matey, here on the Forum you will find the greatest bunch of friends you can find. There is always someone who will provide a shoulder to cry on or someone who will laugh with you.
Best of luck to you and join in the forum fun.
Chunky

#3
Welcome

You'll find loads of different types of people on this forum, as you do in life. I hate my PD but we all have no choice but to deal with it. Some days will be ok, others ...not so.

Tell us your story, please . We'll all try to help.

Firstly, do you live in Downham in London or Lancashire?

Once again, welcome
:grin:

#4
Hello DP and welcome to the forum, sorry to hear of your diagnosis (dx).

Your anger is part of the process of acceptance, which I certainly went through and I'm sure others will tell you the same. Ive been dx for 12 years now and there are some days I still feel angry about my having pd but when I feel a bit better I am able to look logically at things and then I find that I cope better.

It is a horrible thing to be told that we have a chronic illness and there are a number of stages that most people go through. If you want to discuss anything in detail, please feel free to private message me, it's a lengthy road to walk and I am more than willing to walk it with you.You will find many good people on this forum who will help you through this period better than any of our friends or relatives, simply because we have experienced it and live with it on a daily basis.

Until we talk again..take care

regards
Glenchass

#5
Dear Downham prisoner,

Welcome to the forum where as you have already seen from the replies above how friendly people are, whether you have pd or are the spouse of someone with it you now belong to the parky family and there is so much support from everyone, they are a wonderful group of people fighting this very difficult condition.
If you feel a little low you can always read the social thread where you will find many interesting posts and mike700 cheers everyone up with his jokes.
Please never feel you are alone in feeling angry it is a natural reaction and you have every right to feel that way. All I will say is try to use the anger and turn it around into something positive or as some else I knew use a punch bag and hit hell out of it doing this will sometimes help your meds to kick in quicker.
My husband has had it for thirty years and is still fighting by doing as much as he can and keeping the brain working. I do hope you will feel able to come on the forum as you will not only get advice and help and support but you will make many new friends who understand.
my very best wishes
vivian

#6
Hi thanks for the replies, I currently live in Norfolk (I know!) my story is much the same as many others an completely different too. I was diagnosed bout two years I think as my memory isn't what it used to be, my life at that time took a tail spin an felt like it crashed an burned! I was diagnosed, made redundant an my relationship of thirteen years imploded this all happened within the space of a few months I think.

I was she'll shocked as I'm 47 an was of the impression that pd only happened to old people.

It's been two years an I'm still getting my head round it an I'm left taking enough daily meds to kill three African villages (prone to exaggerating as my school report says!) a serious auestion is: if I only take 6mg ropinerole end up feeling slug like an if I take 8mg I end up paranoid thinking all kinds of madness, anyone else had this experience?

Kx

#7
hi DP
ropinerole affects people in many ways. madness on 8mg is not good. if its 8mg per day its still a low dose so bad side effects are not good. if its 8mg 3 times per day that is too much. you need to speak to your doctor and hopefully try something else.
are you on any other pd meds?
cheers

#8
I'm on 1mg rasagiline once a day and 6-8mg ropinorole a day too, also cipralex, landoprozole. I used to love taking drugs now I can hardly remember sometimes to take them,

I appreciate all the direction offered about anger although I do have wild mood swings

Kx

#9
did you take ecstacy? if so you might want to let your doctor know in case it's after effects are interfering with the ropinerole.
cheers

#10
Hi do
I was dx last nov at 53 and yes I'm angry even more so when I developed bells palsey as well because of pd.ive had a banging headache since April and yes I'm at an all time low.ive got a wife a nd three kids with disabilities .ive had most of the symptoms.gone through all the emotions but yes i feel lone looking in on my family don't know what I going through.if I can help with anything just ask .anyone will help and I don't believe everyone excepts pd nobody wants it.

John

#11
Hiya welcome to the forum,im ali im like you was dx young.ive had pd 12 years in november im 43 now.ive never to ropeinole meds, but have took many others and of which two of them made me parinod as well. A very un pleasent feeling.can either not take them, reduce amount,or carry on cus it will rite it self if your body can deal with that drug.as you may be aware plenty of good people here to surport youvsnd one another, this i have found is a very good forum and puk website has plenty of detailsad well.hopebto see morebof youvaround:smile:

#12
WHOA !!!

Fighting spirit! Good I love it...

You're right of course. NEVER, EVER, let a diagnosis become your badge of identity because, if you do then you're sunk with no survivors.

Hello, my name is David and I am a newbie to this forum. I would love to chat with you just to find out a little more about your mindset but rather than just launch straight in, what I would rather do is refer you to my own first entry entitled; just an experience. That way, you can get a better and more clearer idea of my mindset just to see if we have any common ground on which to speak further.

Warm regards
David