PD friendly society?


#1

 My grandmother had Parkinson's,  I have only just found out.  My parents hid her in a home,  were embarrassed by her decline, her social unacceptability,  her appearance,  her confusion.  I remember being told that I couldn't visit because it wasn't appropriate (what did that even mean?). Her death was met with little comment  that I can remember (though I think I had just discovered boys so ....)

Yesterday,  I was listening to work colleagues talking about Parkinson's,  they had forgotten I was there, or had temporarily forgotten all the platitudes they'd heaped my way when I 'fessed up' to my declining sate,  my 'guilty secret',  my shame. I won't repeat their comments but suffice to say that at some point they noticed me - not a comfortable experience for any of us. I'm debating staying at home today; I don't know if I can keep on pretending not to notice them pretending not to notice my tremor. It bothers some of them. A lot.

Last week I was in a restaurant.  A family turned up with a relative who obviously had advancing Parkinson's.  Several people were visibly bothered by her presence - she 'ruined' their lunch (toilet conversation); they either stared in horrified fascination or forcibly averted their gaze.  The waitress was pretty cool though. 

A Parkinson's friendly society?  We've got a long way to go.  I don't think 'Why me?' (why not me?) but I'm truly embarrassed to admit that I find myself asking 'Why this?' and wishing I could trade with something more socially acceptable. Utterly,  utterly ridiculous (a pity party - I know) but it's stupid o'clock in the morning and it's bothering me so I figured I'd try writing it down - might even get a couple of hours sleep before I get up and decide whether or not to head to work - I really, really hate Parkinson's :(. J 

 


#2

Good morning...stupid o,clock is just the right time for hating this illness...I share your feelings precisely .

And then by chance something little will lift my spirits and my resentment fades until the next silly o.clock! 

It is good to meet you .


#3
My husband is the one with PD...only diagnosied recently at 59...had it for at least 4 years but misdiagnosed for 4 years.....but thats a whole new ball game... I can relate to exactly what you are saying as his wife...my he sband at this time is burying his head in the sand...he has a really bad hand and mouth tremor...he can hold his hand but not his mouth! We find that people stare when we are out as his mouth tremor is noticable...but if I look at them they turn away in embarrassment. My husband has only just told his work as he has a very manual job and is falling into things as hes losing his balance. He told his HR as he is a driver as part of his job but insisted they didnt tell his actual work department. Last week he had to tell his direct manager because he was always put on the heavy jobs because he was reliable whilst his younger colleagues.refused to do the heavy lifting etc cos they are just lazy!!! I threatened to go to see his work and tell them myself as I see the effects on him in the evening .He us still able to work but needs to be allocated lighter work which is available. ....hes now worried that his younger colleagues will think hes a wimp and lazy......after all the work hes done in years gone by! PD is a very very embarassing disease....we have friends who wont mention it and avoid us, surprising what an eye opener its been from every angle of our lives. ...we have 3 adult sons who ignore it and dont ask how things are etc.....we have 3 Grandsons and 1 is on the ball , if my husband is shaking a lot he tells Grandad to take his tablets.... I stuggle with the disease more than my husband as he wont talk about it but I see effect it has on him every day....I worry for our future .......... I too wonder why PD came to our lives....its a total s**t disease with so many hidden agendas........

#4

Wow it was great to read your version of our existence!

i was dxd at 49years of age and am now 68 ...still here still struggling ...still catching my husband eyes of sorrow when he thinks I don't notice?

i know I shed be grateful for being here still and able to communicate but I,m not good at saying how I really am ...how it really feels,.

We have 4 grandchildren and most days the littlest is too strong for me to hold ...I hate that. 

I hope we keep in touch as you are the first couple with similar situation that I have met.

Thanks for great explanation...hope we communicate again soon .

yodapark

 

th

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#5
Thank you for the very honest replies. I was also diagnosed at 48/49 having been told I was stressed when I first went to see my GP a few years earlier ( to be fair, I was also stressed ) and I have also lost friends who can't deal with it, and have others who call it my 'condition'. I think they are afraid that they may catch it if they say the word! It is rubbish from any angle and that's for sure. I'm working on being bolder and challenging rudeness and ignorance, but in reality, I'm too tired and wimpy :-/. I honestly think the emotional impact of Parkinson's is underestimated; just having a safe place to off load and say the things that friends and family don't want to hear - and being able to express fears and worries without being judged and without having to consider the impact on the listener - would be such a relief ( and release) but that sort of support is expensive so back to the midnight rambling I guess. Thank you again for answering, take care. J

#6
I have found so much ignorance with people since my Husband was diagnoised....heres just a few of the classic comments I have had said to me... It only means he will shake a lot Dont worry he will get better soon it wont be forever Youve been a carer all your life...whats the difference now? Is it because you wont get paid to care for your husband like you do in your carers job? You want to try working 2 jobs...parkinsons is nothing compared to that But your husband looks ok are you sure hes got PD? I cant say I am sorry to hear that news as it doesnt affect me The list us endless.....I do not want people to feel sorry for us...maybe just acknowledge that things will be different for us Friends who say if you need anything just ask.....but how can you ask for anything when they always tell you abiut how busy they are etc etc..... Trivial things in life they make into big things.....things they can change but choose not too... We have family ourselves who havent even bothered to pop round to see my husband since his diagnosis,just send the odd text to make out they care..... I have always been a very happy easy going person always the 1st to help friends, but I am now becoming angry at everything and everybody. .......not nice at all..but I always do the "caring" bit to my friends and listen to them moan and say the right things to them...... Sorry for the rant..I know my Husband is the one with PD but I see things from a totally different angle...the man I love and married 41 years ago is changing before my eyes and everyone just ignores him and the disease.....

#7
Hello Babesbrown, I'm reading your post and thinking about my husband. I'm the one with PD but he has alot on his plate adjusting to this new diagnosis. It's good that you can come on the forum and let it out. So far I'm not too bad physically and life is as normal as it can be but I know my husband is thinking of the future and what it may hold. I'm very lucky, just as your partner is in having your support. Keep up the good work. DivineR

#8
I got to say your all amazing and reading your replies is heartbreaking. Years ago my Sisters Father in law had PD she didn't want in her bungalow sitting in her chairs as may have accident I no longer speak to hear, when my mother was living with me and only have days to live she not talk to Mum on the phone it broke my Mother heart. So if my Sister knew I have PD I know what her reaction would be. I have had put stare and say nasty comments but I am not going to hide away I will confront them. I have a wonderful Husband who would do anything for me, we are retired couple and enjoy life. I have decide when the times comes and my life is unmanageable I will go to a clinic where I can end my life and on my terms and it's my life. Some people might say this is wrong but they are the ones without PD. You all so brave and the carers suffer so much and do feel guilt being cared for. Sending positive to you all. I hope my word have not upset anyone. PJ

#9

 

Hi

I went on a walk with a parkinson's group not so long ago, A lady who's father has parkinson's asked me "what is your connection too parkinsons?" , I left a pause before i answered saying i have parkinsons.

And here is a joke.


What do you get if you cross santa claus with a duck?..... a Christmas Quacker.


#10

Morning world ....just been reading through this chat and one thing that stands out is the pitiful ignorance around this most hateful of conditions ?????

soooo how do we try to.  Educate the world ? 

A tall order especially as the world does not want to be educated........

but in this time of correctness surely there is a place for sensitive and caring awareness? .

what can we do 

what CAN we do? 

What can WE do ? 

What can we DO?

Apologies for abysmal punctuation and blame my cursor ...it just doesn't listen !,,

 


#11

Morning world ....just been reading through this chat and one thing that stands out is the pitiful ignorance around this most hateful of conditions ?????

soooo how do we try to.  Educate the world ? 

A tall order especially as the world does not want to be educated........

but in this time of correctness surely there is a place for sensitive and caring awareness? .

what can we do 

what CAN we do? 

What can WE do ? 

What can we DO?

Apologies for abysmal punctuation and blame my cursor ...it just doesn't listen !,,

 


#12

Hi Yodapark,

Seeing as there are 1 in 500 of us with this wretched condition, we should be able to do something surely! God knows what though. Although, to be honest, until I was diagnosed 4yrs. ago, I was very ignorant of what Parkinson's entailed and had little interest in discovering more.

The media and celebrities with PD are our best way forward, I think. Michael J Fox has done an awful lot of publicity and brought it all to people's attention in America. Parkinson's gets mentioned on the news over here occasionally, but I suppose Cancer and Alzheimer's will always be the 'big ones' in media terms.

There must be people with other neurological conditions, saying the same as us......those with MS for instance. Also, I really feel for people with ME, who aren't even recognised as having a problem!

Well, I haven't answered your question, but maybe others will come up with some ideas???

Twinks.

PS.  I certainly don't think wearing a T-shirt displaying slogans about Parkinson's, is the way forward. I'm always getting posts on my Facebook page, showing them.........has anyone ever bought one?


#13

TWINKS.  good morning ...am quite thrilled that anyone has replied. Thank you .

what to do is the eternal question. 

The parkinsons society do a fabulous job and I would not take any of that away from them . 

I think that we are missing a trick however in constantly allowing. Our condition to be  acceptable or OK or manageable . 

IT isn't and most days can be a trial.

I am not a complainer but would like to be solution orientated and until the magic solution is found we need to face up to how to get the world to be more tolerant. 

From another non t shirt wearing  person ...!


#14
Morning everyone. Beautiful cold but sunny morning here...sun streaming through the house showing up my dirty windows...haha Just another classic comment my friend said yesterday...when she saw my Husbands shaking arm and mouth. ...Doesnt that get on your nerves all that shaking? My reply; No its PD he cant help it unfortunately. Her reply: I would tell him to stop it,it would make me want to slap him. My reply:Actually the only person I want to slap is you for your ignorance. .. There was a stunned silence before she said she was sorry and hadnt realised it was a touchy subject!! One thing we found out yesterday is that my Husband is brilliant at whisking eggs now! I got to keep a sense of humour around things....and we dont and wont wear PD t shirts either. Have a good day everyone x

#15

I agree: I want to be more proactive and challenge people’s attitudes towards Parkinson’s,  but on a bad day, I  cannot even say:  ‘I have Parkinson’s’. I am  truly appalled at  myself for being so ridiculously  ashamed of this condition and people’s reactions to it and  this, of course, perpetuates  the seemingly never-ending  downward spiral of feeling like cr*p.
I always wanted to be a  ‘fighter’ but we are what we are and what I am is a rabbit in the headlights, freeze in the face of adversity type ....  and rabbit in the headlights types don’t wear the t-shirt (though we are very grateful to those who do – and slightly in awe).
I don't think I can ever accept my Parkinson's, I find it  totally unacceptable, but acknowledgment might be possible  – and maybe trying out a small badge rather than a full sized t-shirt  :-S
Take care. J 


#16

I think it's sheer frustration we all suffer from. And the fact that there has been no better drug than Levodopa, (which was developed in the 1960's), to ease our symptoms. Well, OK, there have been other drugs added, to make the L-dopa work longer, but still Levodopa is considered to be the 'gold standard', when managing PD. I know DBS is a more recent development, but what a barbaric invasion of our body that is. Yet we are willing to undergo anything to make our lives a little bit easier and more 'normal'.

If people knew, how much we are left to manage this condition virtually on our own, they would be shocked. It's sooooo difficult to explain to non-parki's, what it's like to be afflicted in this way. Perhaps we need to lobby for more Neurologists who specialise in this subject, as I know there is a nationwide shortage of them.

Frustrated of York!!

 

 


#17

Why  oh why, since there is no cure, are there not multidisciplinary clinics which could be accessed by people with movement disorders so such long-term conditions could be managed taking advantage of the most up to date knowledge in the separate disciplines which seem to be just that, separate,  at the moment.  I believe there are two or three in the whole country.   


What is the latest news on the PD UK project on the better management of Parkinsons?


#18

Since my Husband was diagnosed I have spent hours reading info and searching the web for anything that could help.....there doesnt seem to be anything new or anything in the pipe line? Only loads of tablets which can cause more side effects than actually help the PD?My DIL works have chosen PD as their Charity of the Year and have raised over £80.000 since January. This is only one smallish company so it makes me wonder how much is actually raised throughout the country in a year?  So it's very depressing to think that there has not been a cure found yet???

As a "carer" and I say that lightly as it's early days for us yet.....my biggest regret is that there is lots of help, advice etc as in groups to attend etc, for the person with PD but nothing for me to go to  just to talk to people who understand.....because PD does affect both people.......most support for carers is aimed at mainly older people!

I know PD have a peer support phone line but not sure if I would feel happy talking on the phone and would worry someone would turn up at the house at the time I was on the phone? 

Am really struggling with this at the moment....sorry :-(


#19

Hi babesbrown, 

Sorry to hear that you're having difficulty getting the carer's support you need. We do have some information on this website that you might find helpful. Here is our Carer's Guide: https://www.parkinsons.org.uk/content/carers-guide-carers-people-parkinsons and section for carer's: https://www.parkinsons.org.uk/content/caring-someone-parkinsons. You can also call the Helpline on 0808 800 0303 for a chat or advice.

Hope this helps,

Edwina

Moderation Team


#20
I feel so sad for people with PD and coping from day to day. I go out people make comments about me and stare I stare back at them which makes them move on. If a child stare and ask why is that lady like that I tell them I am a webble and I cannot shop wobbling. I am not going to stay in and change my life for anyone, I am going to fit back. I have made some changes in my diet I am now sleeping better. And I am open to trying different alternative therapies that will benefit me. This is my life I cannot change it so will embrace it and make as good as I can. The gong of you all. P j