I don't believe you just said that

Caio
Yesterday I was shopping with my wife looking around the charity shops. Yes I admit it I am addicted to charity shops and I have a wardrobe full of clothes and shoes to prove it. My father was Italian, we are quite a vain lot. I had had a really rubbish day the day before. My meds didn’t seem to be working at all so I had the tremors and violent body jerking most of the day which as you all know is exhausting. I went into a shop that i use a lot and the staff all know me. A young guy in his early thirties who works their came over clutching a designer polo shirt. " I’m glad you came in because I saved this for you." It was an XL I am a medium at best now, since the medication has taken about two stone off of me. I held it up against myself and it was massive. “It’s a bit big” I said. But thanks for thinking of me. Then I started telling him how big I used to be when I was bodybuilding and now, since be diagnosed with PD I struggle to open a packet of biscuits. Then he said" Your looking really well, what’s meant to be wrong with you? “Parkinson’s” I said. we all have bad days. I suffer with anxiety and you should see me if I don’t take my meds". Now at that point I wanted to insert his medication where the sun don’t shine but instead I smiled and walked away with steam coming out off my ears. I couldn’t move my head because of the pain in my neck and shoulders, my tinnitus was turned up to ten, I had only slept for four hours in the last three days and I have been constipated for the last week. To say I was not at my best was an understatement. He was comparing anxiety with having Parkinson’s. I also suffer with anxiety so I know how bad it can be, but I don’t understand how he can compare the two. It often surprises me how little the public know about Parkinson’s. Most seem to think that you just shake a little bit. When I am asked how are you? They expect me to say " Oh I’m O.K. But now I don’t. Now I just say " On permanent Vibrate. And watch the trouble expression on their face.
Ciao.

That’s funny! Yes people ask,”how are you.” They don’t really want to know … yes people think when you have PD it’s not that bad - but when you have Cancer it’s tragic!! I work with PD patients and they are rigid and can’t communicate their needs etc.

I’ve lost patience with small talk.
They ask, I answer.
End of.

2 Likes

I just say “next question!”.

1 Like

It’s when people say how well you look you cannot possibly have Parkinsons. A bit of make up works wonders, but inside I am battling with anxiety, trying not to sway and trying to act normal even getting the key in the door is a struggle.

Hi

I agree so much about public understandind. PD is such a complex and disabling conditition and yet is “passed off” by many as a mere inconvenience. I have also experienced the response " Oh, Parkinson’s Diseases, that’s where your hands shake a bit isn’t it" on a number of occasions. I don’t know what the answer is, but I like your answer “On constant vibrate”. I’ll borrow tat one if I may.

Take care

Cled

I don’t think there is enough out there to educate people about Parkinson’s.
I have got funny looks when tremor is bad and have been accused that I am not disabled etc
But then people are rude when they don’t understand something.

I will borrow I am on vibrate though if you don’t mind.

A very close family member said to me, “ your ok at least you don’t shake”. I don’t have a tremor but more than make up for it with really bad muscle rigidity, insomnia, chronic fatigue, anxiety, depression, loss of dexterity in my left hand, no arm swing, dragging my left foot… you get the picture. To say my blood was boiling was an understatement. And thats family…

1 Like

It’s when they roll their eyes when you can’t do something because you are having a bad day

I own my Parkinsons not the other way round. Why should we expect people to be knowledgeable about PD. I don’t know much about COPD Or MS or lots of other medical issues,why would I, I have no interest in them. I know quite a lot about PD and will spend a couple of minutes explaining there are are lots of types of PD if I think someone interested. There lots of info out there for people to learn about PD if they want to know more. But if it’s not effecting them why would or should we complain they are not be educated about it. My wife’s got Allports but I’m guessing very few people outside our close family know much about it, Again why would you know unless you are touched by it. I guess what I’m saying is parkinsons is our issue and it’s up to us to try and educate those who want to know. If they don’t just pass them by and get on with your life

1 Like

Well said, I couldn’t agree more parkinson’s and the small p is deliberate does not own or define who I am.
It is up to us, if we want to tell those around us what it is and not to expect them to know. I regularly give talks and recently wrote a blog on the work intranet explain that it still me and parkinson’s is just something I have.
Hope you have a good Christmas with those who you love and love you for being you😎

You are so right about people - they only say “how are you” - that does mean “now tell my how you are doing, tell me everything, I really feel sorry for you”. No one other than someone with either PD, MS, MND or any other denigrative illness really cares or understands . I have the dreaded Parkinson back condition (Camptocormia) and I feel embarrassed how much I stoop - you can feel people looking and making comments. I some times want to shout out that yes it does hurt and yes I am embarrassed and yes it gets worse every day that passes. But then, I just smile and say “Hello” - and this goes for some friends and family too.

1 Like

people don’t understand ‘different’ in any shape or form, to some it means bad and its thanks to people like that why you can start the day off in a positive way when leaving the house but return home feeling like a freak. after a day that not only has you struggling with tremors/ dystonia/freezing etc but on top people stepping away from you in the checkout line/discussing whether you are drunk and my favourite …….oooh bless are you cold ? (Tremor). but some how we all continue to find the strength to fight another day xx

Hi @Eve1, in awe of your courage and strength! Thanks for sharing your experience. I was wondering if you have found that exercising more with the help of a physio has somehow managed to keep the worsening aspect of camptocormia at bay? Wishing you all the best