Charlie, many genetic trials do not allow the patient to be on DBS.

I said in my first post, that if I were diagnosed with Parkinson's today, I would not go for a DBS right away. I would keep my options open. Many people posting negatively in this thread do not realize the affect their advocating for more patient involvement has been heard. I have seen many positive changes, espiecially on the Michael J. Fox website from being able to choose where your funds will be applied for research, to the National Parkinson's Foundation, where they have now included patient needs into their mission statement.

My neurologist is more receptive to my complaints and no longer just blows me off with "I've never heard of that being associated with PD." Don't be so negative Paula. You have had a positive effect. I agree that it is probably too late to help us, but you have PLOWED (forgive the pun) the way for those recently diagnosed. Charlie you have enlightened so many about DBS, but I still believe that it is a later option than an immediate one. I realize Medtronic is encouraging patients that it is better to have the surgery earlier than later, but patients need to have time to understand their disease and learn about how fast it progresses for themselves, and how severe their symptoms are before they approach such a serious decision to have surgery.

Charlie, have you heard of or met the new Director of the Minnesota Mayo Clinic. They have a young neurosurgeon on staff who has some interesting theories on how DBS actually works. Was told this by my neurologist at my check up last Thursday.

Love,
Vicky

IIn most trials for anything, DBS is not allowed.

I think it is a unique decision for everyone. IF your life starts sucking like a Hoover.....its time to consider it!!!

No I haven't heard of him. Do you have a link to him??

Sorry, my neurologist only told me general details. I imagine if you do a search on "Rochester MN Mayo Clinic Neurology" you should get a link.

Charlie, I understand your enthiusm for DBS. I am also grateful for the technology as it saved my life. Please keep in mind that patients have to give themselves time to be educated and have some experience of living with PD. You must remember what Debrah Seltzer underwent by having DBS before knowing exactly what her diagnosis was. She was very educated. She also was left with unnecessary brain injury. She was very helpful in educating the Parkinson's community about the FDOPA Scan which most doctors would not educate patients about. The reason was the cost of the scan would not change the treatment for the patient. That is starting to change as neurologists are beginning to listen to patients.

Love,
Vicky

Vicki;

It behooves anyone contemplating a DBS, to learn as much about it as they can, with programming in particular.

This is ESPECIALLY true of where the good programs are located and which one's to avoid. I would hope that people would make up their own mind.

In CS's case, I am pushing it because he is a great guy and I hate to see him suffering so, when their is relief available.

Deborah Seltzer was a unique case. I would just say that I draw few if any conclusions from her case that would apply to the rest of us.

My MDS took one look at her MRI and said this lady has Chari malformation. Why the docs at Wake Forest did not see it??? Who knows??

FDOPA PETscans are expensive and unreliable. The isotope has a half life of 24 hours and fresh "juice" is needed to get a good result. I have been told that only UCLA and Robert Woods(I think) have the nuclear medicine facilities to reliably make it.

Operator expertise is extremely important too.

We all have to travel our own road. I got my DBS after 12 years with PD. I have a guy that just joined my group that had his two years after his DX , due to his inability to tolerate the meds.

My advice to everyone is when your quality of life stinks, you are off more than you are on, your meds aren't working and you are maxxed out, well its time to consider a DBS.

Charlie