Cs-thanks for this thread. What's ironic is I have been thinking lately about going part time or not at all..my symptoms most days render me useless after 8 hrs of work as a secretary at the hospital here. And if we have extra travel or functions, or just more stress generally, forget it...
If I am not working and have tht time to do the housework, shopping visiting, travel, it woudl be fine. With 40 hr work weeks, the rest of it goes to the wayside. It's frustrating. It's been 4 yrs since dx and 5 since symptoms became irritating enough to seek treatment.
SO I am seriously thinking of "retirement". I know there are threads here which approach the subject and will look them up, but any advice wouldbe well received...you can PM me. Thanks.
Steve..so sorry to hear about your friend, that's tragic...but pretty awesome he was training for a triathelon. Hope your next week proves less stressful.

Waaaaydaminute dear one! What was going on when you turned off your devices to show me your tremor? It was the second worst shaking I've ever seen! Made me shake to look at it. Seems like, with all due respect to a beloved friend, that we need to include ALL the facts. What am I missing here? What did I misunderstand about your PD that day?

Another thing, dear friend, love you to pieces, cs is another of my faves, and I don't think it's quite accurate to say he's dismissing it out of hand. He's taken the time to answer at length to reassure you. He's still the only one who lives inside HIS head and feels HIS pain, and you know from raising those beautiful kids of yours that you gotta let them make their own decisions. Let go of it, please. We love you for your passionate caring, AND we are the only ones who know how it feels before we take our meds in the morning.

Now back to the topic, which was how to please YOURSELF instead of everyone else, or something like that. True confession: I think maybe, just maybe, it's not my doc that's the problem but my own wish to be super-Parkie. D'ya think, just a little bit? Well, okay, that's kind of harsh. My wish to be--not super-Parkie--but as brave as Paula.

J.

Didn't see your post. Tons of spiritual support coming from this location. Love, Jaye

Thanks Jaye..On a good note I got the rental car..Nice ride, and only $185 for a week..Now I can go and pay my respects to my friend..

I think you have all done a wonderful job here, describing the pro's and con's of DBS...both before making the decision to have or not have, and after -either the struggles of living without the surgery, or living with the results of the surgery (the "markedly improved" and the devastatingly disappointed.")

Just one more observation to add to the pile that I have not seen mentioned anywhere else. I'm not suggesting a conspiracy or coming to any conclusion based on this, but...

Isn't it odd that none of the famous PD'ers have opted for DBS?

Michael J. Fox I believe is no longer a candidate due to prior brain surgery. But what about the late Pope (while he was alive, of course), Muhammad Ali, Janet Reno, Fidel Castro and the extensive list that I'm sure you are all familiar with?

Again, no conclusions, but some of the people with the best resources available to them, where money is no object and the best doctors and hospitals would "bump" them to the top of their priority list...and not ONE of them was a medically-approved and willing candidate?

I don't know that this means anything at all. Just another thought to add to the never-ending list. Any thoughts or theories?

In the meantime, Good Luck to all of us and our respective decisions.
Keith

I believe that these people are waiting for the cure.

I developed tremor post DBS. I had none before the surgery. My doc explained it to me, that the trauma of the surgery speeds up the next set of symptoms that would come on naturally. SInce my DBS is very effective at controlling tremor, its not a problem.

Charlie

Michael J. Fox I believe is no longer a candidate due to prior brain surgery.
not necessarily true

the late Pope (while he was alive, of course) religeous grounds I'd imagine


, Muhammad Ali, too far along??


, Janet Reno- not that bad? other physical maladies, age

, Fidel Castro- surgery not available in Cuba, age, other illnesses

We have to keep reminding ourselves just how different yet the same each of our individual symptom bundles are. We share a lot of common problems that seem to vary in intensity. My tremor is not much of a problem but for others it might be incapacitating. DBS may be great for one and terrible for another. It is part of the knife edge we each walk and one of the things that is so maddening.

The apathy thing is one of the scarier threats for me. If that ever gets me I think it will be over so I snarl and scuffle in true rat fashion and thus far keep it at bay.

Now I am going to go OT for just a moment because there is a lot of pain and fear in some of us and a need for hope. I don't know if anyone pays attention to my ginseng thread or not. Little comment or discussion. So I am going to say something here where those who need it may read it and then I will shut up.

The stuff works for me and works big time. I am unquestionably better than I was a year ago, six months, even three. I have been using it for 12 weeks now and have dropped the selegeline and my blood pressure meds both. BP was 126/75 today and never went below 130/90 on the meds. I am functioning an order of magnitude better than I was when I began. The only negative I have found is that I have to watch about taking too much because of dykinesias but paying attention is all that requires. Now rather than hijack the thread, I suggest that this move to the thread I have been using for it or PM me, but those who are having such a rough time, think about it. This is about as plain as I can be without slipping into legal jeporady about medical advice.

Now I will shut up.

So – DBS – it’s a hot topic. It’s a scary subject. Should it be done early? Should we wait? If we wait – what are we waiting for? Despite a long battle, I doubt that GDNF will be available in my lifetime – at least not from Amgen. And that is a tragedy for all of us.

An acquaintance had DBS surgery early – very early – so early and so many years ago that it wasn’t even approved by Medicare yet. And she felt so strongly that it was the right decision for her that she paid for the surgery out of pocket. Now after many years, she is on a miniscule dose of an agonist – and that’s all. DBS is her medicine. She is happy with her choice. And she made her choice at a time when DBS was reserved for the most advanced pwp.

Times have changed. I had a long talk with a neurologist who now believes that DBS should be done earlier rather than later – and the sooner the better. And he knows his subject well – he has had the surgery done on himself. DBS is his only “med” – he needs no other.

This doctor recommended I have DBS now. I shook my head in disbelief – and I told him I’m only at stage 1-2 – and I told him I wasn’t ready. He said it would be good to have it done early because it relieves stress on the brain. I still said no – I wouldn’t sign up for DBS now, that I was saving myself for a clinical trial. He stopped then, looked me in the eyes, and agreed that someone needed to do that.

But imagine that you have advanced PD and a doctor (a doctor who again has had DBS surgery on himself) heard you describe all your symptoms and then told you he truly believed DBS would help you. You still say no to DBS. What else is there? You considered clinical trials, but decided the ones available were not right for you. What is left? To tough it out? To suffer silently? Why continue to suffer when DBS may help?

And no I’m not at advanced PD yet. But I can’t help wondering at the choices we make. Chasmo – you make a great case for having DBS or at least carefully considering it. CS – you have carefully thought things out and DBS is not for you. So in 5-10 years what will I think? What choices will I have made? I won’t know until then. But until then I’ll be thinking of you all, and keep considering my options carefully.