Information Fears


#1

  As a newly diagnosed, 37 year old PwP, I'm at a point where no one else notices just yet, so I'm using this opportunity to learn what I can and plan a new route for my life. I'm assuming I'll have no more than 2 years of use with all limbs- to surf/box etc, so I'm doing those while I can and doing the adventure holidays now -not later. 

Anyway, my point is that I attempt to learn as much as I can about this dreadful disease, there are constant references to palliative services and gruelling side-effects to the meds- all of which has forced me to balance the pros and cons of seeing this disease through to it's end. So naturally, I'm wondering if at some point before I need to go on meds, should I take matters into my own hands??

Please don't think of this as an irrational or sensationalist question, I'm simply being completely practical as I don't want my parents and family being put through the undue misery of seeing me decline from a busy fit 37 year old, to a an elderly and infirm man within 5 years. 

Surely Parkinson's patients, if not more than others, have considered this route? I'm not trying to drag the mood down or be sensationalist in this thread, I'm just asking a simple question. 

Thanks!

Px


#2

Get a grip mate!

the answer is NO NO NO!

I was diagnosed 6 years ago and I am perfectly capable, given a tablet and a bit of cheese, of chopping wood, writing a catchy tune, having sex, drinking cider and answering your question. And that's just this afternoon.

Some folk find the meds tricky, but we find them a breeze. Some people deteriorate quickly, we change slowly and adapt. Are you a winner or a loser?

its (mostly) up to you.

Turnip

ps catchy tune:http://musescore.com/user/148238/scores/159911

no link for other activities


#3

Welcome, HughesNewbie --

Please do not even consider that route!  You are 37; I am 67 and wouldn't consider cheating myself out of whatever years I have left.  You have half a life or more ahead of you, and this disease will not rob you of  enjoyment.  Believe it or not, you will be the same person you have always been, even if your body does not behave as it used to.  Your post seems to indicate that you are a logical, sensible, self-controlled individual still in the stage all of us go through: learning to accept PD.  It is not by any means the worst medical news you could receive.  As Turnip points out, it is a slow-moving illness for most of us, and medications lessen or eliminate symptoms.  My case is particularly slow, and if you have been diagnosed and even your family members can't guess, perhaps you will be as lucky as I.  Today, when I meet people, no one guesses I have PD either.  But I have had it over 16 years!  I play the piano, hike, garden, work out at a gym, travel, and manage my own household (I'm a widow).  If an old lady like me can cope, so can you.

Don't let yourself think about suicide.  Nothing PD can do to you would hurt your family and friends so much as that.  Just keep calm and keep in touch with forum members.  Turnip has been a source of invaluable information for many of us here, and I'm sure you will find others whose posts are of great worth to you.

My sincere best wishes! 


#4

Thanks Turnip! That s cheered me up no end this morning - catchy and spooky!

 

samdog


#5

thank you samdog.

that was the intention


#6

where do you get that tablet from turnip ! razz


#7

Wow HughNewbie - 2 useful years left!  I doubt that.  I am 3 years diagnosed and except for problems with exhaustion, some fascinating dreams, and a slight tremor, I don't feel any different than I did 3 years ago.  In fact, I am in better shape now than I was then because I have taken to heart the idea that exercise slows the progression.  Don't let PD define you.  Listen to turnip and J of Grey.  They know what they are talking about.  There may not be a cure in my time but I would shocked if it wasn't found in your lifetime.  So shed that dark cloak of depression, get exercising, avoid stress and step boldly into the future.


#8

Opps! 1st time using new forum & i've timed out and lost my post! :(


#9

Hi HughesNewbie

I was diagnosed at age 39. Like most people in that situation I was shocked and scared. I read what I could about the condition and although I tried to stick to 'responsible' sites and sources I scared myself witless.

I didn't tell people about the diagnosis and didn't talk to the people who could best help me understand what I was going through. I maintained the 'ignore it' strategy for 6 years before I became open about my diagnosis. 

My diagnosis was 9 years ago now and with the help of a bit of medication I can do most of the things Turnip can do. I can't do the catchy tune bit but that's nothing to do with Parkinson's. I'm still employed in the same demanding job that I had when I was diagnosed.

I'm not trying to downplay the impact of Parkinson's. It changes your life but it doesn't end it.

You will discover that there is a great deal of research into the causes of Parkinson's and into better ways of treating it and, eventually, curing it. Among the people supporting the research is a growing army of  people affected by Parkinson's. Since I lifted my head out of the sand I have drawn great support from supporting research. 

I hope that helps

Elegant Fowl

 

 

 


#10

FGS Hughes. There are far worse things; our friend has a lung tumour, another is in remission from cancer and yet another is awaiting  an operation without knowing what their future will be.

You live with Parkinsons. We have lived with it for 16 years, OH diagnosed aged 47. Yes, we altered our plans for the future in that we did it sooner rather than later.

10 years after OH was diagnosed we did a cruise around the world for 80 days! After that we visited Greenland, Iceland, the US and Canada and just 2 months ago came back from a 24 days cruise to the Caribbean.

Yes, Parkinsons is a raw deal but most of us cope, because we want to and because we have to. I would far rather have my OH with me in whatever way than be without them...............think of your family and face it.

 

 


#11

HEAR HEAR EVERYONE...I CAN'T ADD ANYTHING TO WHAT YOU HAVE ALL SAID.....KEEP TALKING AND KEEP SMILINGrazz


#12

wensleydale,grommit, it all in the cheese. mind you, i was knackered afterwards.


#13

HughesNewbie, please post again.  We want to know you're coming to grips with this diagnosis and realise that you will have far more than two good years ahead.    J


#14

please post, if we (I) were over zealous its because we care.


#15

Hey All,

Thanks a lot. Sorry for the delayed response. I've just been taking some time away from the scary online stories tbh. 

I do understand that I'm not in imminent danger of death, but I don't think it dignified to compare myself with those who have alternative, perhaps more acutely life-threatening diagnoses- it's not a competition of misery.  

My dexterity and mobility have been affected and other issues are presenting themselves so I think it's normal to feel a sense of loss for the life/lifestyle one previously had (or intended to have) which may well not return. I can't just pull myself together because other people have lung cancer or worse- mortality acceptance is a subjective journey.

I very much appreciate the encouraging messages and bits of advice. I do realise that I have some time to absorb the diagnosis and plan for a somewhat different future. I'm still ignoring real life- calls/email/texts etc but hopefully I'll feel up to getting back to life soon.

Thanks a lot. 

Paul

 


#16

thats great news when i first got dx 8yrs ago i thought my life was over ! i still get weepy days, but just have second to think and carry on.tomorrows another day good or bad who knows wink


#17

HughesNewbie, thank you for posting again.  I said in my first post that you sounded like a logical person, and you clearly are.  Your arguments regarding mortality and comparative thinking are sound.

The clause that struck me personally was "I think it's normal to feel a sense of loss for the life/lifestyle one previously had . . . ."  When I was first diagnosed, I said the same thing to my husband in nearly the same words.  He did not at first understand the emotions I was dealing with.  I explained that it seemed quite normal to me to go through a period of mourning for my health.  I had lost something forever and could not accept it in an instant and simply go on!  Eventually, he understood.

Perhaps another factor deepening your sense of loss is your age.  Many of us were diagnosed in our fifties and sixties.  In contrast, you see more of your life being affected by this illness; hence, your loss is in a sense greater than ours.  The very fact that you express a hope for getting back to "real life" is enough for now.

Again, I truly wish you well.


#18

Thanks J, you've been amazing! x


#19

I have only read your front page and bits and pieces of the other posts, which are all very much in line with what I think.

I was told not to worry when diagnosed........you will die of 'something else'. I now make sure I am wearing clean underwear every day in case the 'something else' is a Double Decker bus.

Naturally it's a concern that my future may be hindered. The most important thing is adjustment to the condition you find yourself in at the time. For example you are unlikely to want, or be able, to run a four minute mile when you are 95. So we adjust and watch people run a four minute mile and have happy memories of trying to do the same.

We all get frustrated, that's human nature. This is why this site is so very important. You can let it out to people who understand and will probably have encountered the same situation.

Plan tomorrow and the rest of your future will fall into place. If you are struggling, seek counselling from professional sources.

My parents are not here to witness my demise, the chances are your's wont be. If they are, they can get help for you, if you need it.

I fully agree with Turnip.......Get a grip. Giving in is for wimps. The ladies on here have the backbone to do it, surely you can look to them for an example.

I have had two friends commit suicide way back in the past. They have missed out on 30 years of fun. Don't even entertain the thought.

Morph.....life's a gift, take it with the good grace it was given.


#20

I have Parkinson's, but Parkinson's doesn't have me!!!!