Should we be ashamed because we have PD


#1
Having just read a news artical on this website I am not at all surprised to read some of us feel the need to try and hide our condition. It saddens me to say although I have never and will continue to not hide the fact I have PD unfourtunly some of have done so. Probably not because they are scared but due to the complete ignorance of others. Why am I not surprised I refuse point blank to look like I am ill and of course the result is sometimes I get challenge as to my right to use some disable items. However I generally manage to very quickly make mincemeat of them. One man on bus I asked him if he got his medical degree from the. school of ignorance and arrongance at which point he realises he was way way out of his depth. We have enough to deal with on a daily basis without adding insult to injury we have not chosen this path it was given to us without any sort of consultation mine can go to hell. Mine can go to hell I telly her that every day 's BB.

#2

Def not! It was such a relief when my movement disorder specialist after questionoing me under the gaze of nurse and examination of movement sent me out for a while to discuss what the nurse had seen while he was talking and then called me back in and said it was the symptons of pd. I had such a struggle to get to the piint where I could get logical answers to what was happening to me. Ive had so many up to this point say it was imagination and anxiety that I dont care what they say anymore's. The people who matter are the one who have stuck with me, supported me and respected me and shown me kindnesses and I will always be grateful to them.

I remember one incident on a crowded bus when I couldn't bear it and the tremor seemed to take over my whole body and I struggled off crying, a woman followed me and stayed with me. We sat down and she just talked to me about all sorts of things until I recovered enough to cope again. She was a complete stranger, but I will always remember and be grateful for her kindness when I desperately needed it.

Porthos


#3

PD is often invisible to those who don't know about it, I've often heard people say PD is 'not as bad' as having dementia. (Based on what? why compare?)

Family members have told me that my Mum 'wasn't that bad' as they know others with PD who have different more obvious symptoms.  I try to explain that rigidity and freezing and very compromised swallow and not being able to walk and thinking difficulties and the range of other symptoms Mum had, are all things that if you only infrequently visit for a short time - and she is sitting in her chair the whole time - you don't see. Mostly my words fell on deaf ears.....

You should NEVER be ashamed of having something you have no control of getting; you can do nothing to cure yourself of; and the treatment of symptoms is so difficult and constantly needing reviewing.

In a letter to my MP about the prescription charges increase I asked why PD is not on the list of exemptions. Some conditions that are exempt develop as a result of life style choices and get worse if the person does not make changes.  I wrote about the 'unfairness of including those conditions in the exempt from prescription charges list.

Those are the people who should be 'ashamed' about their condition.....as they could have prevented it and certainly stopped it from progressing by changing their diet and excercise levels.

PD just arrives, progresses and does it's thing.....PwP respond to their diagnosis by meeting it head on - taking the meds to keep it at bay - deal with the side effects - and coping the best they can. The stories on this Forum are so inspiring.

BB - the answer to your question is "No!"

Keld

 

 


#4

Hi still me wiRh pd

You made good point about difference in being embarrassed at times and being ashamed. I just wanted to say I wasn't,t upset when asked to leave for a while. At the time the GP I had  had just taken over from one that retired and the first thing he ever said to me was that he disagreed with all the reports from the specialists so far and believed I had anxiety issues. I had been told to push for movement disorder specialist referral by the neuropsychologist dealing with my memory issues. The GP had actually wrote in his referral letter that he was referring to them a lady with a psychometric tremor ( I think that's the right word, when it's made up in your mind). I was so relieved they were taking my symptoms seriously. I hadn't even considered pd, I had a stroke a few years ago and really thought it was connected to that.  I have also changed GP.

It's one thing having strange stares and comments from people around but you do expect better from your GP!

Take care

Porthos


#5

Hello All,

I agree 100% with all the reply's to my post I am hoping this post will encourage those of us with PD including me, to start talking about how they feel about our common dx. I for one have NEVER EVER felt ashamed of having PD. I also have no issues with anyone weather I know them or not asking me what my medical condition is so long as they are asking without an attitude on. However I do have an issue when people assume I am a liar or a fraud. Someone a while ago accused me of lying about having PD and their reason was apparently because it caused me attention, bloody cheek. 

How dare they I don't want this thing that has chosen to invade my life and if I could get rid I would this was strongly pointed out to said person although I can't say I was this polite BUT if ever I get accused again of telling fib's in relation to this I will always fight back and I will also make mincemeat out of my accuser. I do not tolerate this sort of thing from my loved one's so I most certainly will not tolerate it from strangers.

I am not ashamed to admit when my least favourite symptom kicks in the Distonia I get very distressed and I hate it happening in public, but that is because it is so visual it makes me feel vulnerable. And that is mainly because although most people have heard of PD very few including medical professionals have hear of Distonia.

I hope this post gives us the push to start taking more about these conditions because it is only through us being transparent that people can learn and create awareness about issues such as these.

Thank you all and lets keep talking folks. BB Xx

 

 


#6

Ashamed? Never. Vulnerable? Yes, the potential is there every time I leave the house.  When the meds are working I go out 'normal' in appearance and mobility, knowing the longer I stay out, the more likely I'll need the refuge of my car nearby in a disabled bay to take meds and recover for the journey home.  The extra wide spacing is essential in actually being able to get in/out of the car,

As BB says, the reaction to using disabled facilities can vary almost as much as the PD symptoms each of us get.  I feel vulnerable when my voice is not strong or clear enough to quickly resolve any challenges.