Is DBS good idea while PD still moderate?

[jackedmonston]

Age 75, diagnosed 5 years ago. Score 41 out of 199 in UPDRS test. Went to new PD doc (old one moved) who said that even though my motor symptoms are still moderate and on one side, I would be good candidate for DBS. I thought that treatment was reserved for people in later stages. Anyone have any insight on this?

[jeeves19]

Yes. DBS relatively early is becoming much more common and is seen as a positive thing. One person I’ve heard of had it 3 months after dx believe it or not! There’s a new theory that DBS process slows the disease down in some respects. But you’re gonna have to do mucho research friend. Get on YouTube, there’s some good stuff there on this issue.

[Hikoi in reply to jeeves19]

Interesting Jeeves, one reason i can think of for not doing it quite that early is misdiagnosis in the early years. I have a friend in the US who was treated for pd and after 3 years questioned the diagnosis, subsequently found she did not have it.

On another forum a poster from US diagnosed and treated many years about to have dbs, i dont recall details now but she also was found not to have pd.

Another who actually had psp but diagnosed with pd and had op before they realised it was psp - so that op didnt help.

I’m not opposed to early dbs but I suspect there is too early as well. Not that this applies to Jack who is five years on.

[jeeves19 in reply to Hikoi]

Good points as ever my shrewd insightful Kiwi🥝

[Roger78]

Age 61 diagnosed 7 years ago My score is around 30 and I have got the same comment from my "young" neuro The same as for you only one side is concerned and she considers that I am a good candidate and that I will live a second honey moon period Personaly I am not ready to have my brain drilled !

[jeeves19 in reply to Roger78]

How did you achieve such a low score with 7 years gone? Application or luck?!9

[jackedmonston in reply to jeeves19]

Who knows? I do spend an hour on cardio exercise and 45 minutes on prescribed "stretches" every day.

[Roger78 in reply to jeeves19]

Hi Jeeves

With another scale I am scored Stage 1 - Symptoms on one side only (unilateral)

I don't know why my score is low

Here some tracks

- 30 min per day cycling

- 2 hours physiotherapy a week

- no stress at all from my partner related to the fact that I have PD

- adapted medication

- up to now luck (soft hereditary type ???)

[dma1956 in reply to Roger78]

I'm 61 and diagnosed at 44 so had PD for 18yrs. My neurologist has mentioned it several times and thinks it would suit me. I'm doing OK The last year has seen a change and now I show obvious signs of PD at various times. My meds only last 2 hrs. Like you Roger the thought of someone getting into my head No Way. Over the last 18yrs I have manged well.

The question is do I put hope into the fact I have managed well so don't rock the boat by having DBS.

Or do I go ahead with DBS that if successful I will have better times for a few years.

More quality time for the grandchildren and family. What do people think Please share your thoughts. I know that the decision is only mine (with immediate family input)

[luba1]

I am 63 years old and I have pd I think 9 years. I was diagnosed in 2012. My score is 30. My neuro, she is a professor told me that I am a good candidate for DBS. She told me a year ago, and every time when I see her. Sometimes when I have a bad day I am ready to do it, but it a lot of risk associated with any surgery, especially on brain.

[jeeves19 in reply to luba1]

But if only 3O why consider DBS? Most after 9 years would kill to have such a score!

[Hikoi in reply to jeeves19]

I think this may highlight the difference between commercial medicine that drives the US health system and the not for profit systems in other countries.

[jeeves19 in reply to Hikoi]

Hmmmm.......yes, food for thought!🤔