Parkinsons awareness bracelet

[Kat00]

I saw a post on face book for a "Parkinsons awareness bracelet. The bracelet had the words ,"Be Brave" on it. Something about this seemed unsettling to me. I think that the "Cure" for Cancer is marketed everywhere and so it should be..But why would you want to support Parkinsons research by telling people to "Be Brave"?

I say, be Bold. be Outspoken, be Active and shake the trees until people realize that Parkinsons can effect anyone!. We must actively seek BETTER TREATMENT, MORE PUBLIC EDUCATION, and a CURE.Sure it takes great courage on the part of anyone dealing with this nasty thing called Parkinsons to live with it- But the message to "Be Brave" sounds to me too much like "grin and bare it".

I would like to hear from you out there...what would YOU like to see on a bracelet to support research for a cure for Parkinsons?

[Hidden]

I think ' be aware', 18 months ago neither me or my family had any idea about this disease. Overnight our lives were transformed, I thought I had a shoulder problem and some nerve damage............. Even now when i speak to friends / family, they seem to think 'well you look ok - your'e on your feet'. People are very ignorant towards PD - as we were before that dreaded day of diagnosis.

[AndyC in reply to Hidden]

Ditto

[Hidden in reply to Hidden]

I was VERY ignorant about PD when told I had it. I have only recently felt like I have an idea of what PD can & has done to my life.

I am so grateful for a blog that helps me understand PD while being sooo positive as they share their lives with me.

[Hidden in reply to Hidden]

I totally agree, what a life line x

[CheriH in reply to Hidden]

Like others, I was ignorant about PD. I had never had a reason to learn about PD until my diagnosis. I thought it was a disease exclusively for elderly people. How wrong was I! As we all know, it can strike anyone at any age. Also, I didn't realize how sick you really are when you have PD. It isn't just the shaking. There is so much more to it than the tremors. I am grateful and appreciative to those who take the time to blog so that I can understand more about PD and what is happening to me. This site helps me to know that I am not alone. I don't know how I would cope without it! Thank you all!!!

[Susie01 in reply to Hidden]

Soooooo True! In retrospect, my first symptoms started around 2004, I was not diagnosed until 02/2011. I am a nurse so feel that I should have figured it out sooner. What I learned is this, not only the general public but also people in the medical field are ignorant. Doctors all told me it could be any number of things, never suggested PD, the closest anyone came before diagnosis was possible MS or Neuropathy...

There are times that I have the urge to educate the general public and the medical community. Maybe I will at some point, I think to educate is more appropriate than "Be Brave".

[Barb070 in reply to Susie01]

Same here...I went through 4 neurologists and a serious car accident before I could confirm what I knew was true and receive more appropriate care.

[jillannf6 in reply to Barb070]

sanme for me

i had a frozen shoulder /neck problems /and a bad car accdient b4 i paid to see a new neurolgist who diagnosed me iwth PSP(eye problems /speech/ balance and fallling and handawriting illegible and typign(!!) now dyslexic/1

I at least get benefits now and care ot help me live my life

and maybe a coyple more years??

i try to get sometting out of each day and do not mind askign for help

love jill

and a big

[DeParkiePoet in reply to Hidden]

I had adhesive capsulitis aka frozen shoulder as a first symptom too, I wonder if this is common?

[SherriW in reply to Hidden]

ditto the ditto

[AndyC]

Hi

I would put "Don`t let Parkinsons rule your life.....RULE IT !!! "........or "Live life with Parkinsons......With a big smile on your face !! "

Andy

[Hidden in reply to AndyC]

Absolutely Andy - and we've gotta keep smiling!

[cabbagecottage in reply to AndyC]

Smiling is almost impossible for many with Parkinsons .

[Hidden in reply to cabbagecottage]

I am sorry if my comment came across as flippant, I know there are many people who are struggling and I do understand xx

[cabbagecottage in reply to Hidden]

No I didnt think that , but not allpeople are aware .

[Hidden in reply to cabbagecottage]

I read it as "smile, if only on the inside".

[Hidden in reply to Hidden]

Perfect x

[SherriW in reply to Hidden]

ditto

[jillannf6]

hi

i agree.

people say i look fine when indeed i am (up 2 a point)

BUT it is easier on thei r conscience if they say that

no wonder whe i knpw exactly what iwll ahppen in a coyple of years (if i am lucky)

but for me that is not importnat

it is doing what i can each day within my limitations (and finances)

lovejill

'-)

[jupiterjane]

"SPEAK OUT" Education on Parkinson's would be a wonderful thing. They should teach it in school, teach it to the young and old. I would love it for someone to come up and ask me questions about what's wrong with me rather than push me aside, ignore, or point fingers at me. I have even had parents pull their children away from me, like I had COOTIES or something!!

[Joealt]

My bracelet would say "I have Parkinson's. cure me"

[CheriH in reply to Joealt]

I like this....cure Me!

[Hidden]

Try and understand

[Court]

I would put something like 'I have PARKINSONS, please help me fight it'.

[RoosterPD]

2 choices:

"I'm shaking, rattling and rolling for a cure"

"no officer, I'm not drunk, I have Parkinsons" lol

Truthfully, I like anything that would get a message out!

[tlongmire]

I saw the bracelet and did not like the message "Be Brave" either. Agree, people don't know (I was one of them) how diverse the symptoms of Parkinson's Diseare are and how they vary from one person to another.

[Susie01 in reply to tlongmire]

I think your point is very valid, there are certain symptoms which most of us have in common, then there are others that only a few have,. It is also so multifaceted due to how nevous system affects every other system in the body.

[par004]

(Question for all Cops)

What's the difference between being drunk and having Parkinson's Disease?

Hint: One is a choice and the other is not!

[SherriW in reply to par004]

totally!

[christinemc]

What everyone has said so far is so true. We all have little or no perception of PD until we actually have it.The general public assume its "shaky old people", and can;t seem to understand that sometimes I walk as though I am drunk (as if!), and sometimes I have dystonia and need a stick to walk.We are all unique but united in PD. Any message should include education of this.

[blackcat]

i agree with all the comments but at this point and time i am glad someone is out there bringing our horrible disease to the surface, so we start with be brave and we as pd people can work on sending idea for different sayings and maybe a whole line can become reality and bring even more attention to PD in the futrure

[shakenlady]

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[SherriW]

I looked up the bracelet, aka 'bravelet'. It is the same messasge, no matter the disease they are sponsoring/making the bracelet for. They are $35, $10 of the cost going to the charity of their choice for the specific disease you are buying for. The bracelet, by its design, seems steep in cost to me, even if it is $10 going to charity. Just my opinion. Their website: bravelets.com/shop/parkinso...

[Auntiekath]

thanks for all your comments. I am having difficulty in coming to terms with how terrible pd is. I can hardly talk about it and I cry a ,lot. all your comments help; thank you

[Kat00 in reply to Auntiekath]

Auntiekath,

I am so glad you have found this site. The people here all understand your feelings and are happy to support you. You are not alone..This is a place you can come to talk about what you are going through.with people who understand what it means to live with Parkinson's everyday... Sending a big hug your way! .