[harley]

time for deep thinking and soul searching. please take your time before you write your reply. the questions will intentionally be ambiguous to allow different interpretations and answers.

1. Have you accepted pd? please explain why.

[Conductor71]

Thank you for starting this thread. Acceptance for me means that, paradoxically, as the illness slows me down, I must work faster than ever before to complete knitting and sewing projects while Sinemet and my body still have a solid working relationship. PD has given me a timeline; I either accept and adapt now to savor doing what I still can, or I end up losing even more in the long run, given an uncertain future. Beyond this rather pragmatic observation, I realize that acceptance means different things to each of us reflective of our cultural or fundamental beliefs; it's an essential part of how we experience life. Do people, as young adults, really put pen to paper and develop a guiding philosophy of life? I never did, but no time like the present to mull it over and loop together some ideas while I knit.

I've always been drawn to Eastern philosophies and wondered how acceptance of my PD might look through the lens of the I Ching. In this sense, one might view it as a balance between dualities; wellness/illness as two sides of the same coin; a yin and yang, so to speak. Acceptance is like breathing. Without the sun, the moon has no light. Without disease, we cannot truly know wellness; without grief, we cannot have joy. "Foregoing...separation, one enters into the harmonious oneness of all things." - Lau Tzu I understand this duality intellectually but have not been able to grasp it on a spiritual level which is where it counts most.

In allegiance to my T2A haplotype (thanks 23andme); rather, I see PD from an existential viewpoint; we have no explanation why, for us it is simply like being, accept it as such. The Gallic in me expresses it with a cosmic shrug of the shoulders. The French have a singular talent for this expression. I've observed calm acceptance to the most mundane things in Paris many times, things that really tend to work us into a frenzy here like rush hour transportation woes, there seem to elicit a reaction of calm acceptance . Epitomized by a driver shuttling us to the airport; when confronted with impenetrable traffic on a cobbled, Medieval relic of a street, he abruptly shifted the van into park, hopped out, and lit a Gauloises. Taking a deep drag, he shrugged and calmly said "ç'est comme ça"- it's like that. Accept it; why not make the best of it? While a traffic jam is a far cry from struggling with PD, in reflecting back, this expression of acceptance suits me. I can't change it, so why not seize the moment, enjoy what I still can? One thing that has been hard to accept is the loss of control I once felt I had over my body; by figuratively shrugging my shoulders, I am regaining control in a sense because I am now more consciously defining my self, my life, in the moment.

Please note, a cosmic shoulder shrug does not in the least mean that I am resigned or apathetic. Quite the contrary, I'm here on this forum and have jumped in with both feet to volunteer and make a difference. I'm on another forum educating other new PWP's about the need for research participants. I can and will write to all web sites that continue to archaically describe PD as "the shaking palsy". I will write to pharmaceutical companies asking them to redefine how they depict PWP in their advertising; we're not all yet in our golden years. I will educate the ignorant acquaintance, who after seeing a film that stereotypically depicted PD (shuffling older man with dementia), exclaimed that he would kill himself if diagnosed.

I can't single-handedly change research models or convince the world of neurology that we need a new scientific research model that goes beyond using placebos, but I can try to affect change by continuing to probe and ask for change, to help fellow patients achieve a respected, prominent role in the search for a cure. Please, I know many of us are more comfortable with quietly sitting behind the scenes and reading, hoping, immersing ourselves in faith, looking for acceptance, and seeking answers that don't exist. As much as we'd like to believe it, hope is not going to bring about change.

Please consider that without more of us becoming a louder, squeakier collective wheel, we're resigning ourselves to not only accept, but to "be okay with" having PD, to be okay with having no real drug improvements in over forty years, let alone a cure. In our inaction, we're nonetheless making a choice, a choice to passively sit on the sidelines letting those with fully cooperative neurotransmitters, in the absence of anything else to go on, define what PD is for all of us, how it looks, and how it is treated.

-Laura

[paula_w]

laura and laura,

you are both coming from the same place, excellent thread. i have just 2 things to say;

when we talk spiritual, i'm going to respond as a christian, because it's an increasingly integral part of who i am.

the key to harmony, the trust, comes from acceptance of all of us. your beliefs are different. we can live with that and keep going right?

thanks laura and laura
paula

[jcitron]

I've accepted PD as a fact of my being. There's not much I can do about it except for trying to do what I want to do while I still can. So having said this, I've been travelling (well until the job ended), I purchased a clavichord a digital harpsichord (Roland C-30) and a grand piano.

My family thinks I'm nuts, but I want to play the instruments while I still can. I'm also going back to school full-time for music. I'll be studying piano and then eventually teaching. Hopefully while I'm there I can take organ lessons because I always wanted to play one of those too. Watch out family. Look whats coming next!

John


As Laura (conductor71) says there's that little timeline to fill in before everything gets too difficult to handle.

[harley]

link to same question in patients like me

http://www.patientslikeme.com/forum/show/50848

[lindylanka]

I think that acceptance for me comes from there being no other choice ..........it is not the first time I have been in that position, and actually PD is not the worst thing I have faced. It would take too much energy to not accept it, and energy is what I do not have - so I save it for better use. I too have a faith perspective, and that helps me, because it helps me understand that we are all connected, and that whatever I find hard, others like me will find hard too - I'm not alone in what I experience. So with that in mind I challenge what I find to be unacceptable, and celebrate what is good. I don't know a different way to be, and as I said, PD is not the worst for me, it's just what shapes my days. It's not who I am or what I do............ and I still find life exciting and challenging, just in a different way, because I have had to adapt to this reality............

Lindy

[Floridagal]

Do I accept Parkinson's disease? Well, if I think of what the public thinks of it(the shuffling, drooling, old guy) and honestly, sometimes I really DO see my self just like him, then, NO NO I CANNOT accept it. It's those days when I start to really believe in that old guy that I'm in trouble, meaning, I just want to hide. Now there are other days when I am feeling better and it seems like, well, it could be so much worse, and so what, yes, I've got the disease. For me, it's ALL about perception and my perception seems to change day to day, and therefore, my acceptance. I don't know if this makes any sense at all, but I often tell myself, "IF YOU BELEVE YOU CAN,,,,,,,,, YOU CAN!" That is such a great quote for me, if I can just remember...FG

[bandido1]

Laura et al: BRAVO! C'est magnifique. Bob C

[stevem53]

Let go or be dragged