Life and work


#1
Hello,

My name is Marie, and my husband was diagnosed with Parkinson’s 3 years ago. I’m 46, he’s 56, and we’ve been together for 17 years.

There was some assorted hellishness to be endured on the way to diagnosis and again after diagnosis when my husband got bad side effects from his PD medication. But at the moment he is doing well on his drugs (Madopar, entecapone and Sinemet CR).

However, he has had to give up work and was awarded permanent disability benefits a few weeks ago. Surprisingly, I found the process more stressful than he did – I was so worried the people dealing with his application wouldn’t understand the nature of the disease. Now that it’s all decided, I feel very relieved, but can see that it is hard for my husband to accept and adjust to the idea of never working (for money) again.

I have been working from home for the last 8 years on various freelance and commission jobs. I used to work fulltime, but as the disease has taken hold of our lives, I find myself working fewer and fewer hours. It hasn’t really been a conscious decision, and I guess in a way it’s a great luxury that I have been able to adjust my work to suit our private needs. But it also means the whole career thing (and the income thing!) slipping away from me.

Life is becoming kind of bitty. Before, the rhythm of daily life came from work vs. free time, but now it’s like the structure is determined by when my husband has his medical appointments and DWP reviews and DVLA tests etc.etc.etc., and I’m just trying to fit a little bit of my old life around all the new needs. I think it helps that it’s been a gradual process, though, and most of the time I’m okay with it.

Anyway, having been a silent reader of this forum for a while, I find that since I joined up a week ago, I just can’t keep my fingers off the keyboard. This is such a brilliant place for advice and support, and the perfect place to go for a bit-player with a bitty life!

All the best,
Marie

#2
Hi. You sound as if you are being very positive about things. As long as the "bits" keep together you should cope. I'm new to this forum too but it certainly seems the place to get information and support. Good luck to you both

Geminipat

#3
MARIEL, YOU POST A VERY GOOD DESCRIPTION OF THE ROLE REVERSALS AND CHANGES THAT COUPLES HAVE TO THINK ABOUT .IT MUST BE DIFFICULT FOR YOU BOTH TO ACCEPT THE NEW LIFESTYLE BUT AS YOU SAY AT LEAST WITH PARKINSONS THE CHANGES HOPEFULLY COME GRADUALLY. I HOPE YOUR HUSBAND FINDS A SUITABLE NICHE AND YOU BOTH FIND NEW WAYS TO ENJOY LIFE. ALL THE BEST ,RUBBISH

#4
Hello mariel
I am 56 got a 9 year old daughter
i have had pd for about six years and its hard people who havent got it dont know or .dont want to know
when ive taken my dosage of pills about 13daily im not too bad and people look at you and think well hes all right
but they dont see me when the tablets are wearing off or when im getting up in the morning at snails pace
I used to run my own dec orating firm for 30years plus and then play badminton 3 4times a week sometimes 5nights
that has all stopped had to give up work
Ive allso been in hospital a few years ago with liver abcess 16days and also had hearnia and my appendix taken out
I keep going by doing fundraiseing for charity if you read some of my other letters you see what a nutter i am
some days are long some go quickly im looking forward to summertime
can do a bit of camping then in our small camper while im still able to drive
you see people worse than yourself with pd .when i go to hospital for 6 monthly check and that hits you more than anything to see im going to probably get as bad slowly but surely
Ive got a recumbent trike and that gets me out and about for an hr or so on nice day
not that many people arond my area as young as me got pd im the only goodlooking one got it so i just get on with it
my local radio station supports me alot and ive been on a few times
I will stop now before i bore everybody

best wishes to all

trikey

#5
i like your latest posting trikeman. i agree when you say people don't want to know about parkinsons. you call yourself a nutter but when folks cross the road to avoid us and socially exclude us to the edges of society we feel invisable. this can be the worst feeling in the world so it makes some of us do crazy things just to say to the world "er excuse me but i have just as much right to exist as you, i will not just fade away ". this is not being so much a nutter but because of the way we sometimes look not many people give us a chance. i know that to cope so well with all our issues we are among the sainest people on the planet. in fact we should all be in the house of commons, us p.w.p. would soon have the country back on it's feet. so carry on being a larger than life "nutter" trikeman .great work!

#6
It such an important point you raise about Parkinson’s being an ‘invisible’ disease. What bothers me most is not so much that some people are totally ignorant – most people have black holes of ignorance (though some more than others!) – but that the bits of “knowledge” that are floating around are so often wrong or incomplete, like PD = the shakes and PD = old people, and PwPs just have to pull themselves together and fight it (and somebody’s great-aunt was practically cured by a Namibian herbal suppository so why don’t we all just try that).

The more we talk about it, on this forum and especially in the non-PD world around us, the more people will learn and understand. My husband and I tell absolutely everyone up front, even people we are likely to spend just a few hours with and never see again, because it saves such a lot of potential misunderstanding and embarrassment. And to an extent, the more times you say it out loud, the less painful it becomes. Well, that’s my theory anyway.

All the best,
Marie

#7
HI all
there is alot of ignorance about
I went to town yesterday and went to bakers oven for a bite to eat with my wife and daughter
I looked across to the next table because this chap kept looking and stareing perhaps because i was wearing pds wrist band on my arm or because i had facial movements to do with pd but i do notice when i go out people looking if my face is twitching etc
or perhaps im such a goodlooking 56 years old on thursday sufferer with parkinsons they cant help it than to look and wonder what is wrong with me
looking on the bright side there is an allfull lot of people who do realise and come up and donate when im out fundraising these are welcome to have a chat
the way i attract peoples attention when im fundraising is in fancy dress costume
ie santa on the trike dolly parton dracula the elf the easter bunny just to name a few but if it gets people to look and have a laugh i dont mind as long as they donate to a worthy cause and i raise alot of money for pds and other causes
my next fundraiser is going to be a barn dance so grab your partner by the hand and come on down and .dance around if you are fit enough
other than that just come and enjoy a .good night fundraising for pds
you wont miss me ill be in some nutty costume with straw hat


best wishes

trikey

#8
Good for you Trikey!

#9
welcome mariel-always talk and listen-anyone will help if possible.

#10
Hi Mariel

"somebody’s great-aunt was practically cured by a Namibian herbal suppository so why don’t we all just try that"

Thanks - made me laugh out loud. I'm still giggling. It is nice that there is a lot of humour on this site.

When I was first dx I almost had compulsion to tell everybody and took a while to work out why - that I wanted to get it out of the way. The reaction from most of my friends - mostly younger than me by 5/10 years -!! except one who knew about the tremors was sheer disbelief, me being so gorgeous and all (at least for 70 years old) and fitter than all of them. So that's one misconception out of the way.

"

#11
Fit and gorgeous, eh? Hmmmmm.... :laughing: :wink: