How soon after a diagnosis of PD should you get DBS - Should you wait until symptoms are intolerable? What can you do to prevent or delay symptom progresssion? My own experience: Had DBS within a month after PD diagnosis. Had already decided to have DBS for Essential Tremors. 5 years since operation. Looking back, I think my Parkinson's began much earlier than 5 years before… read more
I was just re-reading the last ten lines written two days ago by Rrtx67 and couldn't agree more, especially the part, "be your own advocate and proactive....keeping them up to date" . IT'S OUR DISEASE, not theirs. and they get daily breaks from dealing with PD; we don't ever get a break. I keep a running log of symptoms and QUESTIONS I HAVE which I update routinely. Two weeks before my next visit I fax it to my doctor's RN, telling her to read it and to be sure my neurologist reads it too, BEFORE my arrival. Then I bring my copy and I review it with both of them so we are all on the same page and so I leave with ALL my questions answered.
I agree. I live just south of Cincinnati and my diagnosis was on May 16, 2016 by a general neurologist who ran a one-man shop. A friend of mine said they heard on the radio that the MJ Fox folks were holding a PD conference just two weeks later in Cincinnati. So I went and found that a co-sponsor was the University of Cincinnati (UC) Health System who had a neurology department of 35 movement disorders professional devoted to just PD and Huntington Disease.. A week later I saw my original doctor and asked him if he went to the Fox conference. He said no, wasn't even aware of it. So I left him and switched to UC who immediately changed the dosage of my meds and had me participate in two research projects. Further, UC has a social worker who only sees PD patients, helping us with the emotional issues, etc.. Switching doctors was easily the single best thing I've done for myself since my diagnosis was made.
@A MyParkinsonsTeam Member @A MyParkinsonsTeam Member & @A MyParkinsonsTeam Member, it is important that one be evaluated by a Movement Disorders Specialist (MDS), which seems to be the case in at least one instance. If your neurologist is not an MDS, then see one for a second opinion. One of my providers told me that DBS seems to provide 7 to 10 years of benefits in terms of reduction of symptoms (and improved quality of life) before the loss of dopamine producing brain cells tips the balance in the other direction.
If afraid of DBS, by all means get a second opinion before deciding to get the operation (I did), and check your neurologist/MDS experience as well as the neurosurgeon's experience. Do they work as a team in the Operating Room? How many DBS operations have they done together and individually? What is their track record? (My surgeon is one of the few who trains other doctors in DBS, and is excellent.) It helps to talk with other people who have been through the experience (My MDS hosts a DBS support group for folks who are considering or have been through DBS, regardless of who their provider is).
Note in the articles the changed view that DBS is not a last resort, but helps more and longer the earlier in the process one gets it. The information about the prodromal symptoms and associated risks might help you to make a decision about where in the process you are,
I probably had Parkinson's for years before diagnosis. Other comorbidities and medications I was taking for those symptoms probably treated and reduced my Parkinson's symptoms so that it was not until a movement disorders specialist evaluated me off medications and on Parkinson's medications that the PD diagnosis could be made. It was not a matter of misdiagnosis - it was a matter of differential diagnosis, and progression of the degenerative neurological disease, and the presence of several other comorbidities that kept me from getting an earlier diagnosis of PD, I think. Which is why I think it is important to have a medical team that you trust and have confidence in, and who are aware of what each other provider is doing with and for you. For that, you might need to be your own advocate, and be proactive in keeping up to date and making sure that information is shared between and among them - even if you are the messenger, keeping them up to date. Sometimes I do a better job of this than others, but when I do, it is always helpful in my overall health. And then, of course, we have to do what we're supposed to do, in terms of medications, diet, exercise, thought habits and sleep habits. The first place to look for a helping hand is at the end of your own arm, someone once told me.
Disclaimer: None of what I have written is to be considered medical advice. I am sharing my experience and information that I have found useful, hope it will be helpful to others
Do any of us know for sure when we got PD?
Apparently I'm only the 2nd person to try answering this question. I am 69 and my diagnosis was in May 2016. I'm pretty functional without a tremor and it's never crossed my mind to have DBS nor do I think I'm a candidate at this time. My impression is that DBS is for those whose tremor is incapacitating them and that's not me, at least not yet.