Did anyone read Jilly Cooper's husband Leo's account of his 11 year battle with Parkinson's in today's Mail on Sunday? It made for pretty depressing reading I'm afraid, and I would have liked to have spared my husband seeing it(he was diagnosed two years ago. Having said that, he copes far better than I do with it, as reading this sort of thing scares the life out of me.
Does anyone have any knowledge of someone with Parkinson's who has had it for more than a decade and is still able to get around?
Apologies in advance if this question upsets anyone, which is far from my intention.
I was dx 11 years ago, and of course I can get a round at the pub - but only when it's my turn!
Have you spoken to Matt in here? He was dx at the age of 8 (yes, EIGHT) and he's in his 40s now. He still works part time, and goes on foreign holidays, etc.
As for myself, I've found there are some excellent sunshine bargains about at the moment in a place called Tripper-Lee.
Thanks for responding Ray, and injecting a much-needed dose of humour to the subject.
I really appreciate your encouraging words.
Hi Budgies, I try not to concern myself about my PD and my wife is excellent and upbeat.I must say though just recently I have been getting alot of vertigo heads and it's driving me up the wall.I'm flying out soon to Corfu and I hope my head will behave.I hate the hanging about and the mile walk (it seems like it) to gate 48 or whatever.
Anyone else get the light swimmy heads,is it the pd or is it me?
Good luck to hubby oh, I was diagnosed in 2005 but had the twitchy tremor in my left arm long before that.
Budgies: ps. I read the Cooper article which was more about the disease than her hubby. I do agree every case is different. Has your husband joined the Parkinsons uk, it will give you lots of info and stories of people coping with our problem.
Yes I do get the dreadful swimmy head. I have had it on and off for 4 years since labyrinthitis 4 years ago. Since I went on the Mirapexin, however, it has gone into overdrive, I have it most of the time and everyday.
I have been given serc 8 (betahistine) which helps a little but not much.
You have my sympathy, it is awful.
I am seeing my neuro next week and will ask him about it. I will let you know what he suggests
I did read the article as I read anything to do with PD. It was a sad read. The journey of this illness does scare me. But I know that worrying about it will not change anything. So that is why I enjoy everyday that I can. Cherish those special moments with my grandson, the joyous days I spend with my Daughter and Son.
And keep a good sense of humour, the best medicine...
Ive been diagnosed for nearly 7 years come January but can date the illness back to my early 20's which is over 25 years!!
When I was diagnosed I was in a bad way - but still walking albeit with a dragging leg and no movement in my arm - but with the medication - even after 7 years - I manage better. I've just had my driving licence renewed for another 3 years - and still go places, do things and enjoy life.
We are all so different but maintaining a sense of humour and positive attitude and looking after yourself helps.
I also found it very depressing ,i chewed it over in my head all day, but remember it was the Mail on Sunday ,not known for looking on the bright side of life is it good news doesnt sell newspapers,would we be discusing it if it was good news ? i wonder, we all have our individual battles to be won lets win them with a smile,
The Mail. I got to "We're all going to hell in a hand cart" and never read it since.
the way i see it, having been on meds for 3 years, i would hope to have another 6 or 7 goodish years on meds (possibly assuming some minor developments in meds) then maybe DBS to add another 6 years. thats 13 years. if the scientists havent got gene therapy working by then i shall be peeved. this might be an optimistic scenario but its what keeps me going.
this is me being cheery, hope it doesnt have negative effects on anybody.
actually the mail on sunday is at its best as budgies' accomodation flooring.
hi ,i saw this thread ,and then asked neibours if they had that newspaper ,i then picked it up and put it strate down ,never read a word i dont no wot got into me ,scared i spose ,i no wot i have bin told about pd about future ways of life,but it not like that for everyone ,we all different at the end of the day,i have had pd 11 years in november and if u took away my other medical needs,arthritus and spine probs,i think im doin pretty ok ,well when i was in hosp the staff said i was doin good anyway and it made me happy then,i think no mater how hard it gets for me ,even on my real bad days if i can find some one to talk to and speak of it i soon feel much beter,i have used my pd in a good way ,i found i could fundraise for people i found i could help run a parkinsons group ,it does not mater im in a chair alot ,it does not mater im shakin or legs are messin me up ,it means im helpin others ,and when i do that ,and see them smile,i smile with it
i see it as im 42 years old and i got years ahead of me still,keep ploddin along folks ,were here for one another ,keep ur chins up
that 'joke' was clunky, how about
'thats the first time i've heard of a budgie..... ' no that would be in bad taste.
no offense meant budgie, except to the mail on sunday.
Ali is right about there sometimes being an upside. Although i would like it to go away now, i wouldn't have not had it. believe it or not, i am a better person for having had it. but if you are listening god, i'm not improving any more.
ali, bless you. Also turnip. i asked O/H to get the Mail on Sun. He refused - he doesn't like Jilly's books!
Advice will vary from numerous different sources.
Personally, I am reluctant to give it because I don't take it too well myself .... it's normally advice, not constructive instruction .... just about as useful as "giving a monkey a firework"
Some simple lessons I've learn't that help me along the way:-
1. Don't look to far into the future .... more than today is too much
2. Only listen to the best advice you can get ... professionals usually, take what they say, put your own interpritation on it and "Do what's best for you"
3. It's a tough game, that's for sure, but take the time too look around, you will be suprised at what strength you have inside.
4. Always remember the body is purely the vehicle used to carry the person around in
5. Be bloody minded and believe in yourself and your partner.
6. There may be a cure round the corner, there may not be .... don't spend time waiting for your lottery numbers to come up.
7. We're all on the same train, to a lesser or greater degree .... the thing is the train is on the move and none of us know, with any certainty, which station we're stopping at. Enjoy the ride.
8. Some time it's tough, and the people who matter understandably think ... What's the point !!!. I've got no outstanding Words of Wisdom to empart on you other that to say ..... It is, hang in there.
9. Laugh and make life as much fun as you can and laugh at everything including the condition.
10. If ever in doubt, in those darkest moments .... refer to Point number 9.
Be strong, life is unfair, especially when the person you love most in the world is suffereing, and there appears to be nothing that you can do about it ....you can ..... tattoo the numbers 9 & 10 in the inside of your eyelids. (only joking)
We may never meet, but people out here will always be in "your team"
PS ..... Ignore anything Jilly Cooper or The Mail says
Jilly Cooper, is fortunately exceptionally rich and for one thing doesn't have to worry about the money issue and can buy whatever (within reason) she wants and although I don't know her, appears to live a pretty preveliged life and it's no different to taking life style advice of Victoria Beckham or Wayne Rooney .... just don't "You are driving your own bus"
Regarding anything a tabloid like The Mail thinks, this is from an organisation that sends reporters to a war zone, gives them a bullit proof vest with the words "Press" on the front, and stands back in dis belief when it's correspondance gets shot at or kidnapped ... exclaiming we are only there in the "Public Interest" ... we don't want to take sides. I also laughed my socks off when one of our public television news corporations got their journalists attacked and equipment stolen and burnt in the recent riots ... Welcome to the real world
From personal experience ..... newspapers do very little in the so called "Public interest" .... it's purely in the papers interest and what is the old saying "Why let a good story get in the way of the truth"
Jilly Cooper is dealing with a condition in her own way .... not ours, It fills newspaper space
As for the Mail on Sunday .... Best used during the war ... Toilet paper
As I said above ... True strength comes from within
ps .... I'm boring myself now
Huge thanks to everyone who has responded to my post. I've taken on board everything said, and feel a bit brighter about things now.
I really appreciate all your comments.
Hi eyeryone i get very swimmy heads thought it was just me doc has taken me off ramipril so see how it goes chris46
Well Budgies I hope the guys helped you, some are tongue in cheek,perhaps the only way.Sorry to gatecrash with my swimmy heads comment.Thanks to chris46 and carolineb211 for coming on board. See,we all help each other.