think about the Doctor's advise for DBS. I understand the prospect seems like climbing Mount Everest and ultimately this is a decision only you can make, however it may be a good option. Have you explored with the Doctor the benefits you may expect to see as well as the drawbacks ?

Forgive me if I sound condescending, you are going through trials I can only imagine. We have been "virtual friends" for a while now and I wish you nothing but goodwill. Shame I cannot come up with better advise

Take care,
Neil.

Neil,

Your friendship and understanding are enough. This turned up on my related video list this morning. It's beautiful and a nice way to wake up to a new day. I thought i'd share it.

paula

http://www.youtube.com/watch?v=SytWT...eature=related

a DBS will give you your life back Your PD will contiinue to get worse, but (speaking for myself) none of the symptoms that it was installed to treat, have returned..NO tremor, bradykinesia, dyskinesia, dystonia. NO meds still.
I see my MDS once very 6 months to just check my batteries. I hope you reconsider your DBS decision!! you are a treasure and to know you is to love you!!
Get evaluated for a DBS!!!

YFFL
CHarlie

Paula,
I am sorry if I offended you with my comment about the Spa, it is made in a light hearted way. What I am serious about is a having a place of PWP, where people can live comfortably, needs are met without pity, and it is within the budget of anyone who needs it. Fiona's description seemed to fit into what I had in mind. There are a couple of places in India like this and are called ASHRAMAS. It is sort of a self sustaining entity for elderly people who have chosen to be there.
I should have made it clear as to what i am saying.
You are one great lady and I admire your spirit. We need you!

Thanks
Girija

Paula
It is apparent that many people (me included, of course) care a great deal for you and your welfare. Maybe you should ask about DBS. Charlie, I didn't know you were off ALL meds! That's incredible!

All of the "gang" who originally met on BrainTalk forums are moving into the latter stages of Parkinson's. And our greatest problem is we KNOW what's in store for us. I remember telling Morton Kondracke (author of SAVING MILLY and Fox News contributor) that Milly "knew too much about Parkinson's," and that's true about us, also. Right now the best and only way approved in this country to rid ourselves of symptoms and cut down or out the medications that are also killing us, is DBS. What have you got to lose? Justs get evaluated - then we'll all help you thinnk it through. One lady who used to post here (Emily) was a person who researched everything to the tiniest detail before making a decision. She had DBS and last I heard from her was awaiting adjustments, but doing well.

I don't have the energy or time (I hate that word!) anymore to fight like I should. Our biological clock is not only ticking; it's all screwed up! When I read the poem, "The Raven," by Edgar Allen Poe (who was a nut), I can relate. Although most think the poem was about losing his friend, Lenore,, I believe it to be his fear of the future - the unknown within himself.

Quoting a few lines from "The Raven:",*

"Deep into that darkness peering, long I stood there wondering, fearing,
Doubting, dreaming dreams no mortal ever dared to dream before
But the silence was unbroken, and the darkness gave no token,
And the only word there spoken was the whispered word, `Lenore!'"

We hear the cuckoo bird chirping on the hour and the pendulum swings closer and closer to our necks.
"Quoth the raven, `Nevermore.'

`Be that word our sign of parting, bird or fiend!' I shrieked upstarting -
`Get thee back into the tempest and the Night's Plutonian shore!
Leave no black plume as a token of that lie thy soul hath spoken!
Leave my loneliness unbroken! - quit the bust above my door!
Take thy beak from out my heart, and take thy form from off my door!'
Quoth the raven, `Nevermore.'"

*source: http://www.heise.de/ix/raven/Literat.../TheRaven.html

We want PD to just go away,and it doesn't. BUT, we need to erase that word, "Nevermore" from our vocabulary. Unlike Poe, we shouldnt even attempt to fight this thing alone. Together we can do it. Thanks for spilling your heart here; I know there are many reading thhis that feel just like you do. I hope by readding your words they will say, "Hey - that's me!"

We are sending good vibes and prayers your way. BIG hug!
Peg

Don't know what I'd do without you guys. girija, you couldn't offend anyone if you tried - you go to that spa lady! i wasn't upset over that just needy of so much more.

thank you,
paula

"Is it my responsibility to always look on the bright side? Always be positive? Sometimes I feel that it is my responsibility to point out that it is raining pretty hard on both sides of the street."

None of us have a responsibility to always look on the bright side and be positive, but what's the pay off in doing otherwise? As bad as it is to have PD (and it does indeed suck), it is 100x worse to sit around and moan about it until no one wants to keep you company any more. Finding humor in meeting daily challenges is the best medicine for me.

Each of us eventually has to find our own way to cope. I don't profess to have the answer for everyone, but if I can help just one person enjoy a really good laugh and hold on to hope for a better tomorrow, I feel like I am doing something positive. This is the motivation I need to keep on going.

sheryl

This thread has been significantly pared. Why? Because it got into a rancorous debate about religion and set a few of our members off. As our guidelines clearly state, we ask that members specifically limit their discussion of religion because it is an area where many people hold very strong points of view (that lead to hurt feelings inevitably when questioned or discussed). Sorry about this, but Chemar did come into the thread and nicely ask members to stay to the original poster's topic, but members refused to do so.

We do this for the safety and protection of the entire community, and because we expect all members to be treated equally (and so all members are equally expected to follow the same set of guidelines). Thank you for your cooperation and understanding.

DocJohn

PS - This is not the thread to discuss this action. If you'd like to do so, start a new thread in the Community Feedback forum.

One of the most difficult aspects of political advocacy is that at certain times we are required to be able to make those who are in positions of power able to truly understand the terrible nature of PD. Why it is important for them to continue funding medical research; why the Social Security system is needed; why young people can lose their jobs; how depression is related and debilitating.

In his new book, Michael J Fox says that participation in the political system is an inherently optimistic action because it implies that you believe the individual still has the power to effect change.

I agree with this wholeheartedly. But in order to positively effect change we must be able to negatively portray our situation. Most would say, realistically portray our situation.

We all have different living situations; we all have different ways to cope.

The reality of living with PD is pretty negative. Coming to this forum, going to congress, looking for answers, communicating with each other, loving your family, petting your dog, simply finding a reason to get out of bed everyday, is pretty darn positive.

A conundrum: No matter how positive, it's not possible to entirely negate the negative. The sun shines and the rain pours on both sides of the street.

That's just reality.

check out neurologix and gaba gene treatment. they have a great presentation on web site