"Dyskinesia - it seems that if there's a hard, immovable structure, my toes/feet/shin bones/knees will search them out to bang up against. At times my bruised-up legs look like they've been used for batting practice. "

Mike


Would that be due to the fact that our short term memories are non-existent and you didn't remember the object was there?? Sorry if that doesn't apply to you as it does to me! lol

hang in there,
paula

I have been thinking a lot about your post, and see how falling is going to become a real hazard. Just what we need, another crack in our heads. lol

I am at a point where a decision could be wise but not quite mentally there yet. Physically I'm just behind you too, but older - i can usually walk but have crawled of course when threatened with losing balance or with dystonia.

I guess it boils down to wanting it badly enough to accept the risk. How much have they talked to you about "losing yourself a little". Not to be negative, but just would like to know how they prepare you for that. Losing - meaning - perhaps depression, compulsions, or hopefully something that can be regulated. Will our personality become regulated too tho? Charlie is a success story and should probably correct any misperceptions I may have stated.

Of course we are already regulated by medicine....including big parts of our personalities.

How do the batteries hold up now that they have been doing it longer?

This is the issue that I avoid the most.

Paula

battery life is good, mine still test as good and they have been in since Oct. 2002.

There are three types of people when it comes to DBS.

some people have got no idea,,and dont want to know...so be it.
others are curious but sitting on the fence, maybe yes maybe no.
others want it yesterday.
You have to ask yourself, do I have an acceptable quality of life? Or am I going between dyskinesia and freezing, taking bucketloads of emotionally altering drugs??

it's a quality of life issue.

if you go with a proven program, your chances of successful DBS are at 90% Plus now.

I decided a DBS was for me when I realized the reason my knees were hurting was because I was reduced to crawling around the house at night.

All I can tell you I'd do it all again in a heartbeat. The 5 surgeries, the infection, the explant, the PIC lines, the month in the hospital.
DBS is that good. Sure there is a 2% chance of complications. You could get hit by a bus crossing the street too.

The unknown is scary for many. When you are no longer scared of the thought, its time for a DBS.When you have NO quality of life, it no longer becomes a question of "IF" but rather a question of "WHEN".
DBS works for the vast majority of us. It has been proven to be better than meds at managing one's symptoms.

It simply is a quality of life issue.

remember though, your PD CAN get bad enough to were a DBS will not be effective.

Charlie

Charlie is a great one to give you all the details (although at times he praises his DBS more than his wife and kids!) lol

He gives good advice. Best to you.

Peg

Parkinson Disease: Guide to Deep Brain Stimulation Therapy is a free booklet available from the National Parkinson Foundation. Just call them at 1-800-327-4545 or e-mail them at mailbox@parkinson.org.

They've updated Fitness Counts and Pracatical Pointers for Parkinson Disease among others available.

Thanks, Dottie!

Peg

This is something worth remembering to quote (or try to, I don't know how to go backwards and forwards on this site!) P.D. can worsen to a point where the surgery will give no signicant improvement. This is a point worth remembering.
Many of you are still in the early stages of P.D. and I personally wouldn't consider DBS yet nor I imagine would a Dr, but there comes a time where life sux and that was what I was basically trying to say in my post on a previous thread.
You'll recognize it yourselves, your life revolves around ons and offs. An on usually has you dyskinesic more than with a smooth on like you previously had, the pain of dystonia is excruciating and you're really not game to do much of anything for fear of yet another of those unexpected offs that you get increasingly more of.
DBS comes along and the change can be quite dramatic in fact it usually is, I personally have yet to meet a DBS pt who wasn't happy with the results.
We all know it's not a cure, nobody said it was but until they think up something better it's the next best thing and at the risk of being attacked by a "non believer" I'm going to be singing its praises.
Anyway that's my 2 cents worth.
Cheers,
Lee

Mike is a good representation of where several posters are and many more readers. He is never comfortable, he gets dyskinesia all of the time - first dose. He can't walk half the time, he can't do his other interests, he has a wife willing to do it with him including long rides with something new in your brain.

He had a very dangerous fall.

God Bless your wife. YOu have many ducks in row, Mike, and you feel like crap. You've got to try DBS for anything to get better.

A group of us are still working on Amgen to at least grant compassionate use of GDNF and continue the pump infused trials; we will run it into the ground and more.

But in the meantime we are getting to the same place you are; and we don't know how long we can continue on at this physical pace,

So you get one and buy yourself time before they get something neuro-protective. Other than GDNF, we have Neurturin...Ceregene starting phase II with many unknowns, hopefully the GDNF trials have taught them some pitfalls to avoid.

But treatment is years away. And wonderful news for Young Onset, who are just starting out with the diagnosis. Scary but very hopeful
We have to get by in the meantime. THis is what we wanted GDNF for and still hold Amgen accountable due to ineptness and miscalculated business interests

I notice how much of a recluse I've become and and relate better to my 3 yr old grandson than anyone. Too many obstacles to overcome to get anywhere.

There is spheramine, phaseII bilateral, very promising but moving at a snail's pace;

I believe that I need to make a decision about DBS if GDNF does not make a reappearance. If I were younger. I'd still be hoping for growth factors and gene therapies but who knows when.

Well thank you for letting me use you as an example, it's something we talk about but avoid and still are afraid.

Charlie, did you hear that Patti H; pwnkle's buddy in Kentucky, finally had one? Doing fine, just had it a couple weeks ago, maybe not even that long yet.

Paula

Edited to add I just read Lee, and I do agree. But I just breezed over that other thread
as I usually do - I'm not trying to avoid it this time. Your post is totally reasonable.

FYI

UW-Madison researcher says stem cell benefits will take timeJoe Vanden Plas . Published 10/07/06

Madison, Wis. - When scientists look back at this early period in human embryonic stem cell discovery, they might regret the hype surrounding this controversial research, but they won't be able to accuse the man who derived stem cells from embryos of contributing to it.

Outlining some of the remaining challenges for stem cell researchers, University of Wisconsin-Madison professor James Thomson took the opportunity to inject some realism into the stem cell expectations game before
UW-educated executives at a CEO Summit convened by John Morgridge, chairman and former CEO of Cisco Systems.

The hype is coming from a variety of sources, and is creating expectations of near-term cures or treatments for debilitating diseases such as Alzheimer's and Parkinson's. While Thomson remains enthusiastic about the potential of stem cell research, he cautioned that its benefits will take time to realize, and he said that perhaps the biggest bang will come in ways that don't make the front pages of newspapers.

Noting that in retrospect, expectations for gene therapy have been oversold -breakthroughs have taken longer than many predicted - Thomson suggested that the same could be said of human embryonic stem cell research.

One of the promising areas of the research lies in the possibility of stem cell based transplantation therapy, but several obstacles remain. Perhaps the most daunting is preventing the process that originally kills cells, which he said could take years if not decades.

"I don't want to sound pessimistic," Thomson said. "This is all doable. It's just not going to happen overnight."
Dynamic research
Thomson serves as the scientific director for the UW's WiCell Research Institute, and co-founder of the drug-screening company Cellular Dynamics International along with fellow UW-Madison researchers Craig January and
Timothy Kamp.

The company plans to introduce a test for drug candidates for heart toxicity, and hopes to do limited cardiac toxic testing in human cardio myocytes - beating heart cells - in the first quarter of next year.

"It's Craig January's prior work," Thomson said. "Craig offers the gold standard for this particular cardiac test, and he's well respected throughout the drug industry, and it gives us immediate access to the market we're going to need for human embryonic stem cell testing."

Thomson believes the public debate on stem cells has shifted in favor of human embryonic stem cell research. Asked about the prospects of the mid-term elections producing a veto-proof majority for House Resolution 810, a bill that would make available new federal funding for stem cell research, he took a wait-and-see approach.
"I can't say," he said. "I'll just wait until November and see what happens.

I would say that clearly this work caused a fair amount of social controversy. It was well examined by a lot of different people, and it's broadly supported by the American public now.
"Politicians in Washington realize that, and whether it's this January or three years from now, the legislation will change."

One of the elected representatives who consistently has opposed H.R. 810 is Congressman Mark Green, who is challenging Doyle, a supporter of embryonic stem cell research, in the 2006 gubernatorial race. Asked what concerns him most about Green, who has called for $25 million in state support for
stem cell research that does not result in the destruction of embryos,

Thomson deflected the question.
"I so much try to stay out of local politics, but it's hard to do because the current governor has been very supportive of us," he said. "All I would say is, as much as this is important to people, it's worthwhile looking at the track records of both individuals and voting accordingly."

Thomson also said he doesn't worry that a challenge to the Wisconsin Alumni Research Foundation's stem cell patents will result in their being overturned or altered. That, he suggested, is WARF's concern. "So Carl [Gulbrandsen, WARF's managing director], his job is to get ulcers over that," Thomson said. "My job is to do good science."