The sun


#1



#2

ik would just like if eny one saw the bit in the sun paper about 40 per sent  of  those  with pd are embarrassed to tell eny one of there illness it was in the sun paper on page 7 on left side


#3

Hi d1d2d3, 

What did you think about the article?

This research was done by Parkinson's UK and you can read more about it on the website here: https://www.parkinsons.org.uk/news/18-april-2016/people-parkinsons-forced-hide-their-condition

 


#4

I did not see article but can believe it is true. I however am not one who hides it in fact i am a walking talking advert that this can effect anyone and if people don't like me because of that then quite frankly tough.

BB x


#5

Hi bb

   Yep I'm the same I will talk to anyone about Parkinsons and LBD , I'm not shy and if a comment is made about my "condition" I will explain in detail what's wrong and how it affects me and my wife. 

Im open and honest about it as the more people hear first hand accounts the more they understand.

iv had some really good chats to strangers about it and most find it fascinating , which is interesting as my speech can be very poor and stuttery but people tend to listen with genuine interest , 

  Lol.   Maybe it's a biker attitude that's needed when you have parky  :-)

    Live well. Cc


#6

I remember a few months ago speaking with a young Grand Mother who had just been given an early DX of PD , she was keeping it quiet from her son & daughter in law as she was afraid they would no longer let her baby sit her grand kids. I felt quite sad  hearing this .


#7
totally agree CC sending you hugs and a great big kids now again just as a friend. Xxx Biker till we die xx

#8
Totally agree. So sad x

#9

my feelings are yes it is sad  and its good that it might  help some poeploe but i think that to have it on page 7 where you might not look on there i just think it it clould of been put so poepole cloud see it


#10

i was take my g/kid

s to the park picturs ect and thats stop so yes i uderstand but not nice


#11

Not nice , I hope you are able to see your grand kids if not at the park but at home visits.


#12

I as well, over the years have educated the public about PD especially many years ago when my wife would have a freeze on the streets and people thought she & myself were drunk ,later on as she falls frequently on the street or in a crowded marketplace , I say "No she is fine it's a Parkinson's moment and yes she has been trained how to fall safely" Many people would think she has collapsed from a stroke or heart attack.

In New York we have the Canadian born actor living here who is beloved and has done so much for alerting the world to Parkinson's ,Michael J Fox, almost all know when I say "Parkinson's moment" that it is a disease.

This Saturday coming we will be in our large Central Park for Parkinson's walk day at times we are 10 thousand strong members arriving to march from all over this planet  and feel as if we are one big family .

Also at this event  we  do have so many people helping us that we may even go so far as to say that we feel quite special & of course we are !

 


#13

I gave up trying to explain to people about PD years ago! Perhaps I just wasn't articulate enough with my description but I knew when to stop talking as soon as the glazed look appeared in their eyes! neutral

When I was working and had to front a meeting with clients, I always told them about my condition before we began for a couple of reasons. Firstly, it dispelled any notions of possible alcohol intake if my tremor got bad. And secondly, I always got the sympathy vote (from clients) when we were looking for extra monies on a contract variation!

Use it for you own advantage too peeps!wink


#14

Blimey! I wouldn't have thought in my wildest dreams that people would or could behave like this towards a person afflicted with Parkinsons or any other similar condition.  Unbelievable and thank goodness i have not encountered such poor human spirit. If i did i would remind that person that they are fortunate not to be cursed by such a disease themselves so concentrate on their thoughtless actions and think themselves lucky. One just never knows what's around the corner.

As for being embarrassed,  Why would you feel like this? Does not compute!  All i can say is that its the people surrounding that person who causes the feeling of embarrassment , i cannot see for the life of me that PD is something to feel ashamed of, in fact thinking about it now i feel proud of myself, not for having it because thats daft but the way i cope with it and look after myself..and why not?

Early mornings i tend to rant on a little apologies, hope the day is a good one for all x

 

Barnowl 1 x


#15

Hi Barnowl1

I am afraid I have come across some very ignorant people as well as some wonderful ones.

Some were just born ignorant and you will never educate them otherwise. It is how we deal with them that matters, having met me in person I am pretty sure you know how I deal with them hence my variety of nicknames. My favourite being the live wire. 

Take care all and be kind to each other (go's without saying)

 

BB xx


#16

no only see 2 out of 8 my wife left me took a bag up to hosptailand said dont come home not wellcome now on my own 6 years i got compulsive bevaiour not funey very bad did things like stelling in aboyin abou t sex chats lines£ 1500  in aboull t 6 weeks i dont think i wi ll every get back but i new i was doing wourg but cloud not stop so if your husband wife or eny one you kown keeps going out without you then ask them to tell you what them up to


#17

yes well yes i go my shop i might start temons and kids thing its funey but i say to then i hope none of there family and yes you do look like you had a few drinks but i just do what i have todo 


#18

hi yes but i would like to say to you am not i myslef i dont want sympathy i just want pepole to udderstand that i may need a hand now again over this 6 years i done the best i can but if its not enouth i dont kown keep well


#19

yes i kown where you coming form i have freezing and yes when you tell someone its ok they look at you as no must be something to do i was going though my bus st and ask for help they didnot help at all mso back to hosptail next day got it sorted i kown there is people who take the pxxxxbut i am not one of then so keep well all the best to you