With a wife newly diagnosed we are clutching at straws and dreading an uncertain future. Trying to adopt a positive mental attitude but we are scared.
To help up come to terms with the future and face 2012 with some optimism can anyone post messages highlighting achievements despite the disease, examples of effective treatment and/or beacons of light in respect of research.
Tall order I know but anything to give us hope for the future would be greatly appreciated even though I realise everyone's cases are uniquely different.
I'd love to hear examples of those of you who have managed to live a reasonably normal life over a sustained period of time in the meantime we are exploring every avenue to fight and resist this cursed disease.
Hello Davech.Its not going to be easy.What the future holds who knows. I get through trying to carry on,and not let any things beat me.Somedays will be worst than others.I try not to blame everything on this illness,and my OH has learned not to take over.Lets hope that 2012 is going to be a good year for us all.Keep posting, There are people on here that give really good advise,but I hope ive helped a little. Angel4ux
Hello and welcome Davech, I'm sorry to hear about your wife's diagnosis. I can really understand how your both feeling but it really isn't the end of the world. I've been dx for nearly 12 years and I worked fill time in a very stressful job for the first eight of those years, I even managed to get a degree. Everybody is unique when it comes to PD so it's hard to predict the progress of your wife's condition for the future. I would advise you both to acquaint yourselves with PD by reading and of course asking questions on this forum. Other than that, just live each day as it comes.
I have had PD for years but diagnosed a year ago. I work full time in a responsible job for the local authority and have recently been given promotion (yes they do know about the PD) I am almost at the end of a degree which I am enjoying.
Have 4 children, one still living at home.
I have a grandson that i look after 2 or 3 evenings a week after work, and am planning my daughters wedding in June 2013.
I know it is easy to say but there is no point grieving about what you might lose because then you miss out on the happiness in your life now.xx
We have had a lovely holiday since Dx and are planning another, I am enjoying the life I have, not mourning what I have lost.
Good Luck and give yourself time to adjust xxx
You must enjoy the good times you have left, save the grief for later, you might never need it.
Most of the more promising research is going to take years before there is any real progress. Learn to adjust bit by bit as time passes. Make some good memories.
I'm not sure if any of this really helps, we all find our own way.
Best of luck
My wife was diagnosed at the age of 49, lived a very active life, was a high achiever, great family, been married for nearly 30 years. That was September 2008. The signs had been there for a number of years, but when it is diagnosed, the obvious feelings of disbelief, shock, anger, frustration, and the the attitude of whatever happens we'll beat it.
Mate, there will be times when frustration and sometimes self pity seem to consume your partner, and you can only repaeta the same answers to why me, what's going to happen etc, well I have no majic answer, yes it's unfair, but lots of things in life are. It's not what happens to you in life it's how you deal with it is a good as advice as I can think of.
Don't think to deeply about what might or might not happen, let fate take it's course to a certain degree, find out the people, and the professionals that you have faith and confidence in and stick with them. Ignore family and friends who struggle to say the right thing, or say the wrtong thing sometimes because they think they have some devine ability to cure the ill.
It's you and your partners problem to deal with, the people who are the moist supportive will come to the fore, it may suprise you about who they are and what they say.
Regarding work, well that's your choice, if you want to and can stay at it, if you can, don't want too, leave and do whatever else you fancy doing. Some things you can, some you can't, it feels unfair and sometimes you may feel like you're on your knees, you may be, but with help, your own or others you can get up and carry on. Get over the fact that 'You won't be happy till you fingd a cure' we may or may not get one, but forhet long termism.... enjoy today and to hell with tomorrow, and the end of the day one thing is for certain that we will all die, why should this condition speed up the process.
Kick it's ass ..... you may succeed sometimes, you may not on others ... but toi hell with it, we're only human, with all our failings, but sometimes the things that go wrong give us the biggest laughts in a wierd sort of way.
Be strong mate, both of you, at the end of the day when all else is falling around you the only people left standing beside you are the ones that matter, take strength from them ... it does work
I cant beat what Catalyst has said,but I have been diagnosed since age 56 (now 62) and in fact very happy and active at present. PD has made me see what is important in life and with the help of a good friend and close family I enjoy life far more now. I stopped my job which I hated, and in my case I moved nearer family achieving some dreams. The first year was dreadful coming to terms and I was prescribed anti depressant which helped too as can deal better with state of health.
Thankyou all for your kind sentiments and supportive eords
Davech I wish you and your OH all the best for 2012 and would support what everyone else has said enjoy what you can when you can PD does allow you insight into what is important and I personally am now more contented than I have ever been. I continue to work full time which keeps my grey matter ticking over and ease the physical by exercise and physio, with a little investment it becomes habit and well-being is improved for me.
Be happy and both take care in the coming year
Hi Dave, and welcome.
I was diagnosed at 50 in 2000, so am now 61 and 11 years post-dx. I took early retirement on sickness grounds when I was 53, and - for me - it was the best thing I ever did. My own philosophy is that whether I live another 5 years or 55 one thing is for certain: the best quality of life will be right now rather than later (if there IS a later), so why would I want to give the best part of the rest of my life to my employers, and only leave the worst bits for at the end?
Furthermore, the greatest enemy and exacerbator of Parkinson's is stress, and for most people this means work. So the longer you stay at work the quicker you'll deteriorate, such that when you finally DO retire you could be pretty far down the scale.
Some folk deteriorate fairly quickly, and these are the ones you tend to hear about. But check out the whole picture. Matt (a regular on here) was diagnosed at the age of 8 (yes 8), and is now in his 40s and still working. EVERYONE is different.
You may have noticed that this organisation recently changed its name from The Parkinson's Disease Society to Parkinson's UK. This is because Parkinson's is NOT a disease, it's a syndrome, or a condition. If people see the word Disease they tend to veer away, in case it's contagious. It's not. No-one ever died of Parkinson's, but usually of some other condition such as pneumonia, perhaps aggravated by Parkinson's weaknesses. Similarly we try to avoid the word "Disease" in speech or writing, although the initials PD are still used regularly as there's no obvious alternative.
This forum has hundreds of members, and a library full of their experiences. Some like me have trouble sleeping and are often found on here at night. As a result there's nearly always someone here if you have a query, want a chat, or maybe a shoulder to cry on. Perhaps you just want to play with the anagrams, etc, in the "Social Club" thread. Whatever your needed this forum is always here for you, so pull up a keyboard, make a hot cuppa and natter away!
Hope to see you around soon.
I guess this disease is so very different for each that it touches. There is not one answer but thousands on its effects and how to cope! this is what makes is difficult!
But any support, view and suggestions are worth listening to!
May 2012 shed a little more light on this illogical complaint, this is at least my immediate wish if not yet a complete cure.
Love to all of you!
I am sorry if I still call it a "disease", for me it is still that!
Thanks again everyone though I'm sorry Titan but I didn't find your posting very helpful. I was looking for encouragement
hi ya davech,welcome to puk,
im ali ive been dx for 11 years im 42 years old
ive always said bout family and freinds around u help u with ur attitude towards any illness,it helps me any way
post achivements that is wot the forum is about to,readin wot othes have achived ,its good redin,there lot of surport on the forum davech,and nice freinds to make and help you
i have used me pd in a way to help me,i used to work in a infant school ,11 years ago ,and then had to retire at the age of 31,and then i felt me life was over then ,but i help run me pd group,i do lot of organizin of funds for it ,and raffles,i do lot of fundraisin for puk,and have met many people with pd along my journey.and i feel this has helped me to come to terms with things.ino we all different and we all cope in different ways ,but ur there for ur wife,thats a good start,workin togeather,iwish u both all the luck in the world,and keep postin ,join in with us,and i promise u things will get beter attitude wise xx
Ignore Titan, Dave, he's always like that.
I can echo those who say that after a period of dread and misery the optimism returns. 5 years on I am still running my own business, have had a book published, am learning a new musical instrument, had to sell my motorbike but used the money to take up photography,can still swim albeit slowly (but what's the rush?)travel lots and all the vitamins I take to keep well have done wonders for my skin and hair too! The diagnosis was also the trigger to my OH proposing and we had a lovely wedding reinforcing our commitment to see this through together.
Everybody's story is different but you'll find on this forum the reserves of courage people seem to discover to draw on even at the toughest times.
Very best wishes
Hi if it's of any help . My husband is now 77yrs . Diagnosed (OFFICIALY)about 5 years ago . He had been struggling for at least 5 years before that . when he eventually went to his GP they said his BP was raised his pulse also fast gave him Amlodopine and water tablets . At his next visit they suggested he got some physio . This is a man who had never, and I mean never ever went to the doctors . I finally carried him there . I lie he went in his forties he had shingles .Anything else that troubled him he got on with ..We knew nothing about Parkinsons. When I was a little girl once had a elderly neighbour who's hands shook .
Having said all that now I know what the symptons are 9THROUGH FROM OUR OWN EXPERIENCE , when I look back , we have been married 53yrs , all the symptons were there . He always walked dragging his right leg Painful dropped shoulder , very poor sleeper with nightmares ,tiny writing ,during conversation , after a while he would completly change the subject , I use to tell him he was rude .
Obviously even then he had been having trouble coping with it and it was his way of coping with it . I could go on and on . His father use to tell him he was useless never good with his hands and i use to tease him by saying he was mechanically dyslexic
His mobility is poor these days and of course at 77 some of the other things that come with that age .
So try not to look forward with doom and gloom it does take a while usually to come to terms with it but you will and there is so much more help out there these days and of course all the lovely people on this site to support you .
Another positive example; my Dad is 89 and has PD. Considering his age he is remarkeably well; lives mostly independently ih a retirement flat (with plenty of family support, admittedly) goes out most days if only to church or a walk to the shop for a paper, heats up his own freezer meals and offers support to some of the less able residents in the complex. He has been overseas on holiday twice this year.Despite his PD I think he is very well given he is no Spring chicken.
Hey, Sallymac ... put it there!